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					                                                 Summer 2010




                                   Teen
                                   camp
                                   2010
                                    Fun in the sun
                                    page 11



08	HeartKids	take	to	the	skies
07	Trivia	nights,	parties,	catch	ups	and	more	
14	A	special	boy	called	Alex
2 Summer 2010 | Charter                                                                                                                                                                                             www.heartkidsnsw.org.au 3




                                                                                                                                                                        cOntents
                                                  Our team

                                                                                      Newcastle Representatives
                                                  HeartKids                           Leanda Blackmore
                                                  NsW Board 2009/10                   Chadlea_blackmore@bigpond.com
                                                  Chairman                            02 49472898




                                                                                                                                                                                 4
                                                  Ryan Payne                          Amanda Clarke                         Editor
                                                  Vice Chairman                       clark6@people.net.au                  Jo-anne hui

Our                                               Allan Bruty
                                                  Treasurer
                                                                                      02 49450522
                                                                                      Mid-west Sydney
                                                                                                                            Design
                                                                                                                            ian chong
                                                                                                                                                                                                words from our chairman
charter
                                                  Stephanie King                      Lisa Chamberlin
                                                                                      mnlchambo@exemail.com.au              Contributors	
                                                  Public Officer/HR Advisor
                                                                                      02 47733007                           dawn everingham                                                     and ceo
                                                  Erron Palmer
                                                                                                                            neil mcwhannell
                                                  Secretary                           Central West Representative
                                                  VACANT                              Mardi Aplin
                                                                                                                            kim mackie                                        6 news and events




                                                                                                                                                                              11
                                                                                                                            ryan Payne
WHo We are...                                     Membership Secretary
                                                                                      lifestudio@bigpond.com
                                                                                      0416112885                            karen sherlock
                                                  VACANT                                                                    mary bowie
We are a children’s charity who are                                                   Belinda Strudwick                     donalda brown
                                                  Merchandise Officer
concerned with the care of children                                                   bstrud@bigpond.com                    lucy reggio
                                                  VACANT
                                                                                      0407 238 214
born with or who acquire childhood                General Committee                                                         kate guild
heart disease (CHD).                              Des Hammond                         Tamworth Representative               lisa white
                                                  Ronnie Tullipan                     Rebecca Taggart                                                                                                teen camp 2010
                                                  Joanne Hansen                       taggart4@bigpond.com
                                                                                      0401 545 803 or 02 6760 3092                                                      12 happy birthday
oUr aims are...                                   employees                           ACT Representatives                   TiNy TiCKERS BaLL
                                                                                                                                                                                      13 new members




                                                                                                                                                                        14
                                                  Operations Manager                  VACANT                                When: 14th aug 2009
To provide various forms of support for           Dawn Everingham                                                           Where: Sydney Hilton
parents and families of newly diagnosed           dawn.everingham@heartkids.org.au    Far North Coast Representative
                                                                                                                            Cost: Members $160,
heart children and ongoing support for            0420 364 125                        Tracey Crutcher
                                                                                      tr2430@virginbroadband.com.au         Non-members $190
parents, children and teenagers with CHD.         Family Support Coordinator          02 6551 4407 or 0410 469 961
                                                  (Westmead)                                                                Special for non-members, save 10%
                                                  Kim Mackie                          Hills District Representative         on tickets if you pay in full prior to
                                                  kim.mackie@heartkids.org.au         Maree Kennedy                         30th of april. Sponsor packages
We do tHis By...                                  0406 424 627 or 02 9294 0800        cambenal@aapt.net.au
                                                                                      0419 607 863 or 02 9629 2552
                                                                                                                            available and will also receive 10%
                                                                                                                                                                                                 alex, my inspiration
                                                  Senior Family Support Coordinator                                         discount if paid in full by end of april.
  rovidingopportunitiesforfamiliesand
•P                                                (Randwick)                          Northern Beaches Representative       To RSVP please contact Mary Bowie
   individuals to network with people in a        Karen Sherlock                      Melissa Sare                          0402 901 921 or                                           16 family support and heart angels




                                                                                                                                                                         18
   similar situation via our regional coffee      karen.sherlock@heartkids.org.au     melissa.sare@gmail.com
                                                                                                                            mary@heartkids.org.au
   mornings, family events, teen camp,            0406 424 620 or 02 9294 0800        0410 233 455
   Christmas parties, fundraiser events           Fundraising Manager                 Far South Coast Representative
   and our all important in-hospital family       Mary Bowie                          Kelly Ison
   support coordinators programme.                mary@heartkids.org.au               kbolling@bigpond.net.au
                                                  02 9427 1440 or 0402 901 921        0429 897 571                          north syDney trivia night
  ncreasingcommunityawarenessofthe
•I
                                                  Bookeeper                                                                 When: 20th Mar 2009
   high incidence of CHD and its continuing                                           Central coast Representative
                                                  Liz Taylor                                                                Where: Our Lady of Good Counsel Hall,
   consequences.                                                                      Alison Lawrence
  iaisingwithmedicalandhealth
•L
                                                  liz.taylor@heartkids.org.au         lav_choc@yahoo.com.au
                                                                                                                            Currie Road, Forestville                                                        merry christmas
                                                  0411 541 127                        4235 7242
   professionals so that a greater appreciation                                                                             To RSVP please contact
                                                                                      Illawarra North Representative        Donalda Brown 02 9453 2107 or                          22 support heartkids
   may be gained from each perspective.           regioNal                                                                  0419 402 399
  ncouragingandsupportingresearch
•E
                                                  represeNtatives
                                                                                      Craig Jackson and Tashan Clayton                                                                 and acknowledgements
                                                                                      tncjackson@bigpond.com
   programmes aimed at the prevention,                                                                                      Bexley Trivia Night
   detection and management of CHD.
                                                  Regional Coordinator                0423 489 430
                                                                                                                            When: 15th May 2010                               23 heartkids merchandise
                                                  Karen Sherlock                                                            Where: Bexley RSL Club
                                                  karen.sherlock@heartkids.org.au     Illawarra South Representative
                                                  0406 424 620 or 02 9294 0800        Bernadette Bailey                     To RSVP please contact Karen
                                                                                      just_2kids@yahoo.com.au
                                                  North Sydney Representative                                               Sherlock 0406 424 620 or
                                                                                      0415 290 566
 Disclaimer
                                                  Donna Hammond                                                             karen.sherlock@heartkids.org.au
 Please remember that the oPinions
 exPressed in any article herein rePresent        donnahammond10@hotmail.com          Coffs Harbour Representative
 Personal exPerience only. meDical Details        0412 924 582 or T: 02 9969 4951
 are sPeciFic tO each inDiViDual case                                                 Jacci Chatterton
 anD maY nOt Be aPPlicaBle tO anOther
                                                  South Sydney Representative         jchatterton70@optusnet.com.au         Mother’s Day Lunch anD PaMPer
 chilD. Parents who require more sPecific
 information should check with their child’s      VACANT                              0422 406 100                          When: 6th May 2010
 own cardiologist. also, Please note, that
                                                                                                                            WHERE: Ground floor function room,                 Donation tins now available
 the oPinions exPressed in the articles
 herein, are those of the author and do
                                                  Hunter Representative               CoNtaCt Us                            Children’s Hospital Westmead                       Why	not	see	if	your	local	shops	or	business	would	
 not necessarily rePresent the beliefs            Kylie Morley                        HeartKids NSW                                                                            be	willing	to	sit	one	on	their	counter?	They	are	
 or oPinions of the committee, staff or           tkmorley@aapt.net.au                Heart Centre for Children             To RSVP please contact                             a	great	way	to	raise	awareness	and	funds	for	
 board members of heartkids nsw inc. all
                                                  02 4934 4444                        Children’s Hospital Westmead,         Kim Mackie 0406 424 627 or
 advertisements in this newsletter are Paid                                                                                                                                    HeartKids.	Please	contact	Dawn	Everingham	if	you	
 for and are not endorsed by heartkids.                                               Locked Bag 4001, Westmead, NSW 2145
                                                                                                                            kim.mackie@heartkids.org.au                        would	like	a	tin	sent	to	you.	Dawn.everingham@
                                                                                      www.heartkidsnsw.org.au
                                                                                                                                                                               bigpond.com	or	0420	364	125
                                                                                      02 9294 0800
4 Summer 2010 | Words                                                                                                                                                                                                         www.heartkidsnsw.org.au 5




WOrDs FrOm
Our chairman                                                Words from our ceO
                                                            L
                                                                     ast month I had the pleasure of       hospitalsandoffices.Thisisontopoftheir
                                                                     attending the inaugural meeting       $60,000 donation to HeartKids Victoria,
                                                                     of worldwide charities focused        derived through the national photographic
                                                            on congenital heart disease. This meeting      competition, won by Jo Larsen who took a
                                                            exceeded my expectations in both its           compelling photo of her son Zeke.
                                                            content and outcomes. As a result of              Canon Managing Director, Mr Kobayashi,
                                                            this, HeartKids is now a member of the         General Manager of Corporate Strategy,
                                                            International Congenital Heart Coalition       Shane McClelland and Manager of
                                                            (ICHC). The group developed its vision and     Corporate Communications, David
                                                            mission, along with a range of goals for the   Klineberg present HeartKids CEO with
                                                            coming year.                                   some of the new equipment.
                                                                Key areas of interest to Australia were    • Australian Surgical Design and
                                                            the focus on life-long care, with particular   Manufacture (ASDM) which will donate
                                                            emphasis on transition services. In addition   a percentage of all their sales of some of
                                                            the group will try to obtain travel and        their products to us.
                                                            medical insurance, whilst ensuring people
                                                            with congenital heart defects can enjoy full   Heart Beads
                                                            lives with the same employment and rights      This concept was
hello everyone,                                             as the rest of the population.                 originally developed
i hope that you have all had a healthy and happy summer         The meeting provided delegates the         by Lexi Dengler
so far. christmas 2009 and the new year has flown by        opportunity to highlight their country’s       at Westmead
and heartkids nsw is now settling into a busy 2010.         organisation, structures, goals, major         Children’s Hospital
   heartkids has 2010 planned with a variety of             issues etc whilst also including sessions      and has been so
events such as chd awareness month in february,             on fundraising (successes and lessons          well received that
a heartkids dragon boat team race at the chinese            learned), awareness, helping families and      HeartKids is now
new year festival at darling harbour on february 28th,      patientsmanagetheirhealthandfindcare,   working to expand
a trivia night planned in manly and the annual tiny         influencinggovernmentanddeveloping         and fully fund the
tickers ball on the 14th august, just to name a few.        health policies.                               program right across
   if anyone wishes to hold an event and/or fundraise           In addition to these sessions, we also     the country. The program
on behalf of heartkids, please contact dawn                 developed strategies, working groups,          provides children with
everingham and mary bowie on mary@heartkids.org.            desired outcomes for a range of key            a variety of attractive beads
au. activities such as these make a critical contribution   activities and a governance team to take the   that celebrate and track their heart
to us being able to sustain and expand our services to      organisation forward.                          journey. These are shown to be a great
our members and we appreciate these events a great                                                         incentive for children and their parents and
deal.                                                       New sponsors                                   become treasured items. It is hoped we will
   the heartkids board currently has vacant positions       In recent weeks we have been delighted         have these in all major children’s hospitals
and if anyone would like to join our board, please send     to gain the support of two new corporate       early in the New Year.
any expressions of interest through to me on my email       partners. These are:
address ryan.payne@vodafone.com.                            • Canon Australia which has already            Ronald McDonald House Charities
   everyone is back from a well-needed break over the       donatedasignificantamountofcamera        offering support to HeartKids
new year and now we are planning and ramping it up          and printing equipment for use in state        I recently had the pleasure of meeting the
in earnest. welcome back to the heartkids staff karen,                                                     CEO of Ronald McDonald House Charities.           to enjoy some respite. Although bookings         and whilst often taken up by cancer patients,
kim, dawn, liz and mary.                                                                                   Malcolm Coutts informed me of a number of         in holiday periods are always strong, there      are available to HeartKids if space allows.
   i sincerely wish all of our members a healthy 2010                                                      new programs and initiatives that they have       are numerous places available during school         To learn more about these programs or to
and heartkids nsw looks forward to achieving great                                                         developed that are open to HeartKids and          terms and weekends.                              apply, simply call 1800 307 642 or log onto
things with you and for you, throughout the year.                                                          their parents to use. These include:              • RMHC – Charlie Bell Scholarships               their website:www.rmhc.com.au
                                                                                                           • Ronald McDonald Learning Program                Thesescholarshipsprovidefinancial
                                                                                                           This program involves one-on-one tutoring         assistance towards vocational studies for
best regards                                                                                               provided at the child’s own school. With          those who have experienced serious illness.
ryan Payne                                                                                                 CHD being shown to affect the learning of         This will hopefully allow these children to
                                                                                                           children in up to 50% of cases, this could be     fulfilltheircareerdreamsandareavailable
                                                                                                           a great program to assist our children with       to help with university fees, apprenticeship
                                                                                                           anylearningdifficulties.                        tools, books etc.
                                                                                                           • Ronald McDonald Family Retreats                 • Ronald McDonald Houses
                                                                                                           These superb holiday homes are situated           RMHC now has 13 of these houses
                                                                                                           right around the country and are available        throughout the country. These are available      Neil McWhannell
                                                                                                           to families who have had a seriously ill child    to those over 100km away from their home         CEO HeartKids Australia
6 Summer 2010 | News and Events                                                                                                                                                                                         www.heartkidsnsw.org.au 7




news &events
                                                                                                                                                                                                          Diary Dates
                                                                                                                                                                                                          COFFEE MORNiNGS aT CHiLDREN’S
                                                                                                                                                                                                          hosPitaL WestMeaD
                                                                                                                                                                                                          When: First Tuesday & third Thursday
                                                                                                                                                                                                                of the month
                                                                                                                                                                                                          Where: Playroom, Edgar Stephen Ward




 What a swing
                                                                                                                                                                                                          RSVP: Kim Mackie 0406 424 627
                                                                                                                                                                                                          northern syDney trivia night
                                                                                                                                                                                                          Cake, coffee and tea will be provided. Feel
                                                                                                                                                                                                          free to bring your own drink and other
                                                                                                                                                                                                          nibblies.
 lady anne funerals proudly                                                                                                                                                                               When: Saturday 20th March, 7.30pm
 sponsored a charity golf day                                                                                                                                                                             Where: Our Lady of Good Counsel Hall
                                                                                                                                                                                                          Currie Rd, Forestville
 held at ryde/Parramatta
 golf club in december for                                                                                                                                                                                Cost: Tickets are $25
 heartkids. it was a perfect                                                                                                                                                                              RSVP: Donalda Brown (02)9452 2107 or
 day for golf and the course                                                                                                                                                                              0419 402 399
 was in great condition. a                                                                                                                                                                                COFFS HaRBOuR COFFEE MORNiNG
 few of us from heartkids
 attended the lunch and had
                                                                                                                                             thank YOu                                                    Date: TBa
                                                                                                                                                                                                          Please contact Jacci Chatterton 0422
 the pleasure of meeting                                                                                                                     canOn!                                                       406 100 to register your interest
 karen laing, director of                                                                                                                    As Neil mentioned in his column,                             BExLEy TRiVia NiGHT
 lady anne funerals and                                                                                                                      Canon very kindly donated to our FSC                         **Volunteers Required***
                                                                                                                                             a camera and printer for use while                           When: Saturday 15th May
 her wonderful team. over
                                                                                                                                             visiting our families in hospital. This is                   Where: Bexley RSL
 $5,000 was raised with all                                                                                                                  a great opportunity to capture special                              24 Stoney Creek Rd, Bexley
 funds going to kids heart                                                                                                                   moments and present the family
 research at the children’s                                                                                                                  with a photo on the spot. Both the                           RSVP: Karen Sherlock 0406 424 620
                                                                                                                                             printer and camera are very easy to                          or karen.sherlock@heartkids.org.au
 hospital westmead. a huge
 thank you to all involved                                                                                                                   use. Here is Becky Howell, receiving                         TiNy TiCKERS BaLL
                                                                                                                                             a photo of her family from family                            When: 14th aug 2009
 from the club and lady
                                                                                                                                             support co-ordinator Karen Sherlock.                         Where: Sydney Hilton
 anne funerals.                                                                                                                                                                                           Cost: Members $160, Non-members $190
                                   Karen Laing (Lady Anne Funerals) Dawn Everingham,                                                                                                                      To RSVP please contact Mary Bowie
                                   Lisa & William Chamberlin, Donna Hammond                                                                                                                               0402 901 921




                                                                                                                                                                                                          Mothers Day
                                                                           iN memory of                                  WelCome to oUr NeW                                                               Lunch anD PaMPer
                                                                           david smitH                                   regioNal reps
                                                                           In October last year, a group of cyclists                                                                                      Mothers will be treated with mini pampers,
                                                                                                                         coffs harbour                           central West
                                                                           from URS Corporation rode from Hornsby                                                                                         lucky door prizes, raffles and a delicious
                                                                           to Newcastle and back again in two days       we welcome Jacci chatterton as          we welcome mardi aplin and belinda
                                                                                                                         the new coffs harbour regional          strudwick as the new central west        lunch and some lovely items for sale
                                                                           to raising funds for HeartKids in memory                                                                                       including handbags, jewellery, beauty
                                                                           of colleague and friend David Smith, who      representative. Jacci is very keen      regional representatives. mardi is
                                                                                                                         to have some get togethers for          from orange and belinda is from          products and more.
                                                                           passed away recently. Over $11,000 has
                                                                           been raised so far, with more to come from    heartkids families in and around the    dubbo. both would love to host a         When: Thursday 6th May, 11.00-     2:30pm
                                                                                                                         region. Jacci will let members know     few meet-ups and organise some
                                                                           afinalauctionofprizes.HeartKidswould                                                                                    Where: Ground floor function room (behind
                                                                           like to thank URS for their support.          about the next event very soon.         fundraising events in the region, with
                                                                                                                         Please feel free to get in touch with   a tiny tickers orange ball on 11th               cafe) Children’s Hospital Westmead
                                                                                                                         Jacci if you are keen to be involved    september. if you’d like help out or     COST: $15.00 per person. Heartmums
                                                                                                                         or would just like to chat. here are    wish to attend a get together please           staying in the hospital can attend
                                                                                                                         her contact details: 042240610;         let them know. contact mardi on                for free.
                                                                                                                         jchatterton70@optusnet.com.au           041611288; lifestudio@bigpond.com.
                                                                                                                                                                                                          RSVP: Kim Mackie 0406 424 627; kim.
                                                                                                                                                                 contact belinda on 0407 238 214;
                                                                                                                                                                                                          mackie@heartkids.org.au
Ryan Payne and the team from URS                                                                                                                                 bstrud@bigpond.com
8 Summer 2010 | News and Events                                                                                                                                          www.heartkidsnsw.org.au 9




news &events
QaNtas JUmBo mystery fligHt
                                                                                                a few heartkids were lucky enough to be
                                                                                                invited to enjoy a mystery flight on a qantas
                                                                                                jumbo. organised by the rotary club of
                                                                                                turramurra and qantas staff, kids from various
                                                                                                charities were taken on a one-hour flight
                                                                                                over sydney, flying at only 2000 feet. at the
                                                                                                completion of the flight, the children enjoyed a
                                                                                                party with all sorts of food and goodies. blake,
                                                                                                vinnie, Jake, caitlin and brittany all had a
                                                                                                                                                         Saturday 20th March
                                                                                                wonderful time on the day.
                                                                                                   Jennifer Perkins, whose son vinnie had a ball
                                                                                                on the day, thanked heartkids for giving him
                                                                                                                                                                         2010
                                                                                                the fabulous opportunity to go on the jumbo jet.
                                                                                                similarly, susan sullivan, mother of heartkid
                                                                                                blake, expressed her gratitude to heartkids.
                                                                                                                                                                      7.30pm
                                                                                                   “what a great day we had for it, the sky


                                                                                                                                                             Our Lady of Good
                                                                                                was so clear! thanks again for giving blake the
                                                                                                opportunity to have this wonderful experience
                                                                                                and also meet more heartkids,” she said.

                                                                                                                                                                 Counsel Hall
starlight
escaPes                                                                                                                                                               Currie Road,
Fun Flights                                                                                                                                                             Forestville
by Donalda Brown

Last year, Starlight Escapes invited some
luckyHeartKidsfamiliesonafunflightat                                                                                                                  BYO drinks, nibblies
                                                                                                                                                                      and glasses
Bankstown airport in November, along with
families from other charities.
    It was a day where the children could
let their hair down. Many activities were
provided for the children, such as a jumping
castle (which was kindly funded by HeartKids       Kate, Damien, and Jared Guild waiting for take off
                                                                                                                                                               Tea/coffee and cake
                                                                                                                                                                          provided
and a huge hit), balloon making, a colouring
competitionwithprizes,andafireengineand    While the children were                                                              Joel, Scott &
                                                                                                                                        Riley Brown
police car where the children could explore        obviously disappointed,                                                              about to board
and have photos taken. A very talented
dancegroupalsogracedthefloorforthe
kids’ entertainment and a yummy BBQ was
                                                   they did get to taxi
                                                   around the airport and                                                                                            Tickets $25pp
provided with plenty of food to go around.         a few lucky kids had the
    Unfortunately, due to poor weather and
poor visibility, the planes did not get off the
                                                   opportunity to co-pilot
ground. While the children were obviously          the plane while taxiing.
disappointed, they did get to taxi around
the airport and a few lucky kids had the
opportunity to co-pilot the plane while taxiing.
                                                   would like to take this opportunity on behalf
                                                   of the families to say a huge thank you to
                                                                                                                                                               RSVP to Donalda Brown
    Despitetheweatherandtheflightsbeing
cancelled, the children still had a great day. I
                                                   HeartKids and to Starlight for hosting such
                                                   a fun day for the children.
                                                                                                                                                         on 9452 2107 or 0419 402 399
Watershed Premium Wines
Mail Order Form    F
Watershed Premium Wines hail from one of the most famous wine making                                                       Deli
                                                                                                                                  REE
regions in Australia, Margaret River. Located in the South West of Western                                                any very to
                                                                                                                             wh
Australia, it is an area renown for the production of world-class wines and                                                Aus ere in
has been at the forefront of the success of the Australian wine industry.                                                     tral
                                                                                                                                   ia
This year, Watershed will donate $10 to HeartKids for every case of wine
purchased from the Shades range and $20 to HeartKids for every case
of wine purchased from the Senses range.

                                              Retail/bottle HeartKids/bottle Retail/case         Heartkids/case        Quantity         Sub-total	($)



                                                                                                                                                                    T




                                                                                                                                                        Teen camp
                                                                                                                                                                             he sixth annual HeartKids Teen           For many teenagers, the 2010 Teen




                                                                                                                                                        HeartKids
Wines	(Shades	Range)
2004 cabernet merlot shiraz                   $16.95              $15.26               $203.40   $183.06                                                                     Camp was recently held in Brisbane   Campwasthefirstcamptheyhadeverbeen




                                                                                                                                                        2010
                                                                                                                                                                             with over 100 HeartKids, siblings    allowed to attend, due to the complexity and
2007 unoaked chardonnay                       $16.95              $15.26               $203.40   $183.06
                                                                                                                                                                    and supervisors from around the country       seriousness of their condition. Many had
2007 grenache shiraz                          $16.95              $15.26               $203.40   $183.06
                                                                                                                                                                    in attendance.                                also never been apart from their parents or
2007 merlot                                   $16.95              $15.26               $203.40   $183.06                                                                The camp was generously supported by      flownonanplane,sothereweremanynew
2007 cabernet franc                           $16.95              $15.26               $203.40   $183.06                                                            Variety Clubs from around Australia and by    experiences for all.
2008 sauvignon blanc semillon $16.95                              $15.26               $203.40   $183.06                                                            Roche Diagnostics and held at the YMCA            HeartKids was most appreciative of the
2008 chenin                                   $16.95              $15.26               $203.40   $183.06                                                            Warrawee, located in Jovner about half        support of our national sponsors. Pasta
                                                                                                                                                                    an hour from Brisbane.                        Master provided a meal and a $30 CD
2008 rosé                                     $16.95              $15.26               $203.40   $183.06
                                                                                                                                                                        The annual event proved to be an          voucher for all campers and Manchester
sweet margaret                                $12.95              $11.66               $155.40   $139.86                                                            outstanding success, with the overwhelming    Unity provided carry bags and drink bottles
Wines	(Senses	Range)                                                                                                                                                sentiment being that it was by far the        for everyone.
2004 cabernet merlot                          $24.95              $22.46               $299.40   $269.46                                                            best held. Teens enjoyed a full program       For more photos and an account
2005 shiraz                                   $24.95              $22.46               $299.40   $269.46                                                            of activities that included a giant swing,    by two of our supervisors Donna
                                                                                                                                                                    hanging vines, low ropes, canoeing, raft      Hammond and Donalda Brown,
2007 viognier                                 $24.95              $22.46               $299.40   $269.46
                                                                                                                                                                    building and water volleyball.                please see our next edition.
2008 sauvignon blanc                          $24.95              $22.46               $299.40   $269.46
                                                                                                 ToTAl                                                                                                                          Top Over 100 HeartKids, siblings
                                                                                                                                                                                                                                and supervisors from around
Personal details                                                                                                                                                                                                                Australia took part in the Teen
                                                                                                   • leaseorderinmultiplesof12bottles
                                                                                                     P                                                                                                                          Camp this year.
Name:                                                                                                                                                                                                                           Left Emily and Belle having some
                                                                                                   (12 bottles per case).
Delivery	address:                                                                                                                                                                                                               fun in the sun.
                                                                                                   •Mixedcasescanbeordered.
                                                                                                                                                                                                                                Below This year’s Teen Camp was
                                                                                                   •Ordersaremetsubjecttoavailability.
State:	                                        Postcode:                                                                                                                                                                        declared an outstanding success
                                                                                                     A
                                                                                                   • llpricesincludeGSTandmaybechanged
                                                                                                                                                                                                                                by NSW attending teens.
Phone:                                         Mobile:                                               without notice.
                                                                                                     P
                                                                                                   • leaseallowupto10workingdaysfrom
Payment details                                                                                      date of despatch for delivery.
To	use	your	Credit	Card	(please	tick 3	type	of	card)		                                               P
                                                                                                   • leasenotethatAustraliaPostisunable
                                                                                                     to phone before delivery.
o Visa	 o Mastercard              o Amex                                                             W
                                                                                                   • inecanbeleftwherespecified,however
Credit	Card	No:		                                                                                    Watershed is unable to accept responsibility
                                                                                                     for any losses incurred.
 ___ /___ /___ /___ / ___ /___ /___ /___ / ___ /___ /___ /___ / ___ /___ /___ /___ /
Expiry	Date:
Signature:	
CVC	(three	numbers	at	the	back	of	the	card)	___ /___ /___ /
Date	of	order:

delivery instructions (please tick 3 one)
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12 Summer 2010| Birthdays                                                                                                                                                                                                                                 www.heartkidsnsw.org.au 13




Happy Birthday
december 2009 to february 2010
                                                                                                                                                                                                                      a big
                                                                                                                                                                                                                  WeLcOm
                                   Fatima El-Cheik Hussein 18-Dec-96   SIBLINGS                           Lauren Van Deyk 14-Feb-95
december                           Charly Mildenhall 20-Dec-04         Dean Ring 1-Jan-99                 Thomas Randall 15-Feb-99



                                                                                                                                                                                                                   to all oure
HEARTKIDS
                                   Navine El-Cheik Hussein 22-Dec-95   Rose Saunders 1-Jan-01             Levi McCormack 17-Feb-04
Hannah Martin 2-Dec-93
                                   Aliza Khan 22-Dec-06                Nadia Azzopardi 3-Jan-90           Blake Sullivan 17-Feb-96
Angus Reay 2-Dec-02
                                   Harry Reay 23-Dec-99                Patrick Achurch 3-Jan-01           James Ireland 18-Feb-03
Curtis Flemming 3-Dec-01
                                   Andrew Papadatos 25-Dec-95          Olivia Pereira 4-Jan-00            Shianne Minogue 19-Feb-99


                                                                                                                                                                                                                     neW
Zahide Gunes 4-Dec-03
                                   Madisyn Moon 26-Dec-04              Jeremy Rooke 4-Jan-00              Amelia Donnelley 21-Feb-03
Cooper Hanrahan 4-Dec-07                                                                                                                      •Donna and Charbel Abourad from
                                   Mickayla Raynes 26-Dec-04           Flynn Day 4-Jan-06                 Sidney McDonnell 21-Feb-08


                                                                                                                                                                                                                  members
Sarah Howlett 4-Dec-08                                                                                                                        Wiley Park with their heartchild Rita who
                                   Alexandra Ansett 27-Dec-92          Neyfa Taleb 4- Jan-08              Shannon Stevens 21-Feb-00
Simon Jarman 4-Dec-07


                                                                                                                                                                                                                             !
                                   Arrabella Beal-Attwood 27-Dec-01    Jake Fuller 5-Jan-05               Jake Clunas 23-Feb-09               has TGA, ASD and VSD
Eva Cole 7-Dec-06
                                   Connor Jones 27-Dec-98              Jaysen Everson 6-Jan-00            Ben Fitzgerald 23-Feb-09            •Mirna Haddara and Ishi Musseme
Ela-Rose Allen 10-Dec-05
                                   Grace Chamberlin 28-Dec-00          Matthew Brown 7-Jan-04             Isabella Sheehan 24-Feb-03
Jaiden Pouicha 11-Dec-03                                                                                                                      from Bankstown with Damour,
                                   Imogen Frawley 29-Dec-93            Belinda Smith 7-Jan-07             Jake Elliott 26-Feb-93
Joel Bird 11-Dec-05                                                                                                                           Zachariah, Leila and their heartchild
                                   Holly Keeble 29-Dec-03              Jasmine Matthews 8-Jan-94          Edmond Huang 26-Feb-06
Haydon Fitzgerald 12-Dec-08                                                                                                                   Celina who has HLHS.
                                   Laura Campbell 31-Dec-00            Emily Holloway 8-Jan-02            Lauren Clifton 27-Feb-89
Alexandro Smitala 12-Dec-02
                                                                       Leesha Predebon 9-Jan-96           Owtn Coetsee 27-Feb-08              •Fatma Nouredine from Bankstown
Morgan Norris 15-Dec-99
                                                                       Matthew Gerlach 9-Jan-05           Alexandra Waterworth 28-Feb-94
Eboney Moon 16-Dec-98              January                             Damian Buckley 10-Jan-96
                                                                                                                                              with Mahmoud and her heartchild
Isadoroa Totonjian 17-Dec-08       HEARTKIDS                                                                                                  Ibrahim who has DextroCardia/Situs
                                                                       Liam Dawes 10-Jan-00               SIBLINGS
Holly Jayne Pereira 20-Dec-06      Morgan Ashbourne 2-Jan-01                                                                                  Inversus, Tetralogy of Fallot/ASD/VSD and
                                                                       Charlotte Meekings 10-Jan-03       Erin Holman 1-Feb-02
Mackenzie Berge-Smith 21-Dec-01    Kyle Hogan Whitehead 4-Jan-01
                                                                       Paul Ansett 13-Jan-98              Harrison Panagopoulos 1-Feb-04      Pulmonary Atresia.                           •Sheryl and Joe Martin from Mullaley           heartchild Casey who has Bicuspid
Dean Kenny 21-Dec-06               Attis Sedain 4-Jan-06
                                                                       Kyle Hogan Hogan 14-Jan-89         Emily Brown Brown 2-Feb-99          •Simon Tagg and Shantelle O’Leary           with their heartchild Archie who has SVT.       Valve and Coartation.
Charlie Andrews 22-Dec-05          Amy-Kate Sales28-Jan-04
                                                                       Ryan Mason 14-Jan-02               Mikayla Grosvenor 2-Feb-07          from Caringbah with their heartchild         •Zlate and Kristine Tasevski from              •Noel and Kanna Quizon from
Michael Maccioni 22-Dec-05         Glen Dawson 5-Jan-79
                                                                       Taelah Davies 14-Jan-04            Tristan Lamb 2-Feb-99
Harrison McWhirter 23-Dec-02       Coralie Thurlow 6-Jan-86                                                                                   Marley who has an ASD.                       Rockdale with Thomas and their                  Rydalmere with Emily, Anthony and their
                                                                       Emma Langan 15-Jan-00              Christie Norris 2-Feb-99
Mitchell Grosvenor 27-Dec-04       Charlie King 6-Jan-07                                                                                      •Belinda and Mark Peychers from             heartchild Alysse, who has ASD.                 heartchild Andrew who has ASD and VSD.
                                                                       Mike Lawrie 17-Jan-91              Prudence Tierney 2-Feb-87
Jet Wan 27-Dec-07                  Shaeli Roach 7-Jan-06
                                                                       Carolyn Kelly 18-Jan-03            Elli Lou Turvey 2-Feb-93            Portland with their heartchild Ayden who     •Cindy-Lee Carmody from Jesmond                •Tania and Mark Batten from Bargo with
Joseph Nolan 27-Dec-08             Josef Norris 9-Jan-06
                                                                       Katie Zerafa 19-Jan-91             Charlie Manwaring 5-Feb-07          has sadly passed away.                       and Lucas Mason from Stockton with              Christopher, Richard and their heartchild
Tonya Kerr 27-Dec-04               Jessica 10-Jan-07 (surname
                                                                       Jack Murdoch 19-Jan-09             James Kenny 6-Feb-05                •Joanne Vidovic and Corey                   Seth-James and their heartchild Zeke,           Joshua who has Tetralogy of Fallot.
Savannah Hutchings 29-Dec-08       withheld)
                                                                       Hayden Van Deyk 20-Jan-00          Michael Rawlinson 8-Feb-94
Jarred Duarte 29-Dec-04            Sophia Lusk 17-Jan-06                                                                                      Jeffrey from Boggabri with Byron             who has sadly passed away.                      •Renae and Heath Downie from
                                                                       Alyssa Heilborn 21-Jan-00          Charlee Irvin 9-Feb-93
Olivia Searle 29-Dec-05            Daniel Madsen 18-Jan-92                                                                                    and their heartchild Jordana who has         •Jessica Pearce and Joshua Pettigrew           Maryland with Liliane, Teghan and their
                                                                       Ben Clark 22-Jan-96                Louisa Jachim 11-Feb-97
Kiara Peachey 29-Dec-06            McKenzie Wright 19-Jan-06
                                                                       Angus Crane 23-Jan-06              Hamish Stevens 11-Feb-97            VSD and Pulmonary Valve Stenosis.            from Ultimo and their heartchild                heartchild Jackson who has R Aortic Arch
Krystal Marshall 30-Dec-93         Julia DiFrancesco 19-Jan-09
                                                                       Alice Moore 25-Jan-01              Kyara Buddle 12-Feb-02              •Kathryn and Sean Minogue from              Callum, who has ASD with distortion of          and 2 Aortic Rings removed.
Isabella Masciotra 30-Dec-04       Noah Masaga 19-Jan-09
                                                                       Joel Williams 25-Jan-06            Taylor Dell 12-Feb-04               Blaxland with Khaila, Allana, Raurie         the Aortic Valve.                               •Greg & Barbara Exton from Revesby
Jade Burns 31-Dec-82               Bella Murdoch 19-Jan-09
                                                                       Joshua Klein 31-Jan-89             Emily Frost 13-Feb-92
Megan Lawler Lawler 31-Dec-06      Cody-Lee Cotton 20-Jan-99                                                                                  and their heartchild Shianne who has         •urzula Lusk from Ashbury with her             with Jack and heartchild Ben, who has
                                                                       Jordan Ramirez 31-Jan-97           Harrison Doran 16-Feb-00
                                   Chris Dawson 21-Jan-80                                                                                     Tetralogy of Fallot.                         heartchild Sophia who has dilated               Ventricular Tachycardia.
                                                                       Patrick Pearson-Achurch 3 Jan 01   Raiyan El-Cheik Hussein 16-Feb-01
SIBLINGS                           Janice Ng 21-Jan-97
                                                                                                          Samuel Moore 18-Feb-97              • Samantha Hughes Murphy and Shaun           cardiomyopathy, complete heartblock,            •Anthony and Christine from Oak Flats
Sarah Lamb 1-Dec-87                Bryce Duell 21-Jan-98
                                                                                                          William Attwood 19-Feb-06           Murphy of Marayong with Chelsea and          Pacemaker, Tricuspid Valve Regurg and           with heartchild Justice who has CHD.
Ayannah Youlten 2-Dec-06           Lucas Bazzano 21-Jan-08             february                           Bianca Peck 19-Feb-03
Jayden Bird 3-Dec-08               Marc Spanos 22-Jan-08               HEARTKIDS                                                              their heartchild Georgia Lily, who has       Ventricular Dilation.                           •Tanja Blunschi and Michael Gebauer
                                                                                                          Abbas El-Cheik Hussein 20-Feb-98
Blake Morrison 3-Dec-01            Sienna Matthews 23-Jan-08           Brooke Holman 1-Feb-02                                                 Coartctation, VSD and recent Endocarditis.   •Katie and Daniel Clunas from Coffs            from Steeple Flat with Heartchild Connor
                                                                                                          Tara Stevens 20-Feb-95
Teghan Downie 6 Dec 06             William Chamberlin 25-Jan-07        Stephanie Re 1-Feb-02                                                  •Skye Duncan and Nigel Duthie from          Harbour, parents of Kyra and their              who has DORV, VSD, ASD, TGA, and
                                                                                                          Violet McDonnell 21-Feb-08
Jordan Gibb 6-Dec-07               Madison Newman 25-Jan-05            Ruby Rolfe 1-Feb-08
                                                                                                          Chanel Estephen 22-Feb-94           Walgett with their heartchild Angus who      heartchild Jake, who has Tetralogy of Fallot.   pulmonary valve stenosis.
Aiden Howlett 8-Dec-00             Holly Saunders 26-Jan-03            Jamie Langan 4-Feb-02
                                                                                                          Amelia Cameron 24-Feb-06            has Tetralogy of Fallot.                     •Lousie Ballard from Weston with               •Montha Khompatlub and Oliver
Harry Larkin 8-Dec-04              Amy-Kate Sales 28-Jan-04            Riley Brown 6-Feb-04
                                                                                                          Cooper Mangan 24-Feb-05             •Karly and Glenn Rogers from Orange         Glenn, Chris, Peter, Crystal and their          Staats from Wollstonecraft with Heartchild
Chloe Thurston 8-Dec-05            Noah Davis 30-Jan-05                Tara Payne 8-Feb-03
                                                                                                          Jordan Uhr 24-Feb-98
Maya Hawkins 9-Dec-05              Jayla Lee 30-Jan-06                 Toby Wardell 8-Feb-00                                                  with Cameron and their heartchild Hayley     heartchild Ryan who has Bicuspid Aortic         Leonardo who has TGA.
                                                                                                          Ishaa Nasir 25-Feb-04
Michael Irvin11-Dec-03             Nicholas Reed 30-Jan-07             Jack Morris 10-Feb-04                                                  who has Bicuspid Aortic Valve Syndrome.      Valve and Aortic Stenosis.                      •Tevfik and Nejla Gunes from Lake
                                                                                                          Jayden Norris 25-Feb-98
Tully Millar/Strudwick 13-Dec-07   Joshua Daveys 31-Jan-09             Ibrahim Abdulkader 10 Feb 08
                                                                                                          Charlie Howell 26-Feb-98            •Barry Watkins and Sandra D’Souza           •Maria and Rick Vermunt from                   Heights with Zahide, Osman and
John Tullipan 15-Dec-07                                                Ibrahim Nouredine 10-Feb-08
                                                                                                          Zac Youhana 26-Feb-00               from Banksia with their heartchild Allegra   Hurstville Grove with Andrew, Dylan,            heartchild Jihad.
Jett Stevens 16-Dec-05                                                 Harryson Rits 11-Feb-07
                                                                                                          Darci Eden 27-Feb-01                who has Truncus Arteriosus.                  Ethan and heartchild Ellis who has PDA,         •Cheryl and Ian Flannery from Marayong
                                                                       Lily Gehrig-Pinchen 12-Feb-04
                                                                       Grace Bull 13-Feb-03                                                   •Jacqui and Chris Baker from                VSD,ASD, Congenital Tricuspid Stenosis and      with Joshua and heartchild Sonia who has
                                                                       Jacqueline Nguyen 14-Feb-07                                            Toongabbie who are expecting their           Discordant Ventriculoarterial Connection.       Transposition of the ventricles.
                                                                       Jacob Thurston 14-Feb-08
                                                                                                                                              heartchild who has HLHS and VSD.             •Alisor and Khaled Taleb from Guildford        •John Fairgray and Kate Reader from
                                                                                                                                              •Kate and Alan Guild from Baulkham          with Sumaiya , Neyfa and their heartchild       Wollstonecraft with heartchild Rose who
                                                                                                                                              Hills with Damien and their heartchild       Shahed who has Pulmonary Atresia, VSD           has TGA.
                                                                                                                                              Jared, who has ASD, VSD, Pulmonary           and PDA.                                        Judith Anne and Michael Greaves of
                                                                                                                                              Valve Stenosis and SVT                       •Julia and Tony Re from Roseville with         Rankin, grandparents to Benjamin who
                                                                                                                                              •Grant Smith and Rebecca Dunn from          John, Nick and their heartchild James           has TGA, complete heartblock, Pacemaker,
                                                                                                                                              MayfieldwhohaveAidon and their heart      who has Epsteins Anomaly and ASD.               Tricuspid Valve Regurg and Ventricular
                                                                                                                                              children Sara and James, who sadly           •Jacci Chatterton from Coffs Harbour           Dilation.
                                                                                                                                              passed away.                                 with Amber, Billie and her
14 Summer 2010 | Alex Reggio                                                                                                                                                                                                                                                www.heartkidsnsw.org.au 15




Alex, my inspiration
                                  Lucy Reggio shares the story of
                                  her very special HeartKid, Alex.




                                                                                                                                                              Throughout the whole experience Alex was our absolute tower          with special needs, and has proven to be an inspiration to many. He




t
                                                                                                                                                          of strength and inspiration, he gives those around him courage and       is not shy about sharing his story, and is not embarrassed to show
                  his is just a fraction of our story about our son Alex.
                  Alex is our very special child with special needs. He
                                                                            throughout the whole                                                          valuable lessons about striving, winning, losing and trying again!
                                                                                                                                                              A very caring representative from HeartKids approached me
                                                                                                                                                                                                                                   off his “zippered chest”. His idol is Jimmy Barnes now, as he also
                                                                                                                                                                                                                                   underwent a similar surgery.
                  has a global developmental delay as well as a heart
                  condition but with an inspirational personality.
                                                                            experience alex was our                                                       during our hospital stay and assisted with information on the
                                                                                                                                                          availability of certain hospital services. HeartKids were very helpful
                                                                                                                                                                                                                                       I don’t know what the future will hold for Alex, but I cherish each
                                                                                                                                                                                                                                   day as a precious memory, and I know that HeartKids will be there to
                     At the age of six weeks, Alex was diagnosed with       absolute tower of strength                                                    by giving parents like me a network of support.                          support each step, as needed.
                  a heart murmur but it was not a concern at the time.
However,itturnedouttobenotsoinnocent.WhenAlexwasfiveyears
                                                                            and inspiration.                                                                  Today, Alex plays in a soccer program for children with special
                                                                                                                                                          needs, which I help coordinate in our local area.
                                                                                                                                                                                                                                       To this day I still congratulate HeartKids, on their continued
                                                                                                                                                                                                                                   support that they give to our special children and their families.
old, after consultation with cardiologist Dr Deidre Holley, we were told                                                                                      Alex has since competed in a Special Olympics statewide soccer           A great moment was shared recently, when I hosted a morning
that he had narrowing of the aortic artery and would possibly need          couldn’tfindthewordstorespond,aswefounditextremelydifficult       tournament, where he proudly had the privilege of being involved         tea, to give the community an awareness of Heart disease in children.
open heart surgery.                                                         in remaining strong.                                                          with the Torch Run and the lighting of the cauldron.                     The support and interest was overwhelming!
    Words can never completely describe how you feel when you are               Alexhadundergoneotherminorsurgeries,butthefiveandhalf              Alex has also been part of various inaugural events for children         Thank you for reading my son’s story.
faced with this news, but so many families face these types of realities    hours of major surgery was the hardest challenge as parents that we
each day of their child’s lives!                                            have had to undergo.
    I simply did not know what to say, nor could I retain any
information. I called my husband from the doctors’ room and Dr Holley
explained the diagnosis to my husband Bob and I. Fortunately Alex was
                                                                                Finally that pager that we’d been staring at for hours lit up, which
                                                                            meantthatwecouldfinallyseehim.OnourwaytoICUwesawDr
                                                                            Nunn. Bob was so relieved to see him that he didn’t know whether
                                                                                                                                                          Lucy Reggio                                        families	have	also	benefited	with	the	
                                                                                                                                                                                                             inclusiveness	shown	on	a	whole.”
                                                                                                                                                                                                                 lucy	has	worked	on	the	following	
                                                                                                                                                                                                                                                            a	special	needs	organisation	for	
                                                                                                                                                                                                                                                            social	and	recreational	programs	
                                                                                                                                                                                                                                                            for	people	of	all	ages	with	special	
spared from surgery at this time and underwent yearly examinations.         to shake his hand or give him a kiss on the lips. Bob turned into a                                                              programs                                       needs	/	disabilities.	lucy	also	ran	the	
    In 2006 when Alex was nine years old we were expecting our              marshmallow and melted as he saw his son hooked up to life support.           lucy	Reggio	Alex’s	Mum	was	recently	                 Football	4	all	committee	which	was	          first	group	of	special	needs	children	
annual check up to be routine. However it was then that I was dealt             The next 48 hours in the ICU were critical, as we waited helplessly       decorated	with	an	Australia	Day	                  an	inaugural	soccer	gala	day	with	about	        through	their	religious	sacraments;	
the news that he would need open heart surgery. The waiting time            for Alex to respond. Seeing his eyes full of tears, we felt guilty and felt   medallion.	The	award	is	an	accolade	for	          200	special	needs	soccer	players	from	          reconciliation,	holy	communion	and	
between receiving the news and undergoing surgery was extremely             his pain. It was only as the last of many tubes was removed that Alex         her	volunteer	work	with	the	community	            around	Sydney.	lucy	is	the	founder	and	         confirmation	at	her	local	parish,	and	
difficultandwehadsomanyfearsoftheunknown.Myhusbandand          commented, “No more hurt mummy?”                                              for	people	that	are	disabled.	                    coordinator	for	some	inaugural	special	         will	be	running	another	group	this	year.
I would just walk around in a silent daze. We both decided to keep the          Alex spent 10 days in total at hospital. The support from the Dr             lucy	says	“As	I	have	a	child	with	             needs	recreational,	and	a	sacramental	             If	you	are	interested	in	finding	out	
news to ourselves, which was hard, due to Alex’s needs.                     Nunn, Dr Cooper, and the staff was very reassuring. Alex did suffer           special	needs,	I	have	advocated	                  program	within	the	area.                        about	any	of	the	programs	lucy	is	
    The day of surgery arrived on September 23rd 2006. Alex was             with a fever and a wound lesion during his stay. Upon his recovery at         to	promote	an	awareness	and	                         Namely,	outdoor	soccer,	indoor	              involved	in	please	contact	HeartKids		
so innocent and unaware of what is about to occur, he went into             home,healsodevelopedfluidonthelungs,whichDrHolleyandDr           inclusiveness	for	children	with	                  soccer,	ten	pin	bowling,	multi	game/            on	02	9294	0800	or		
theatrewantingconfirmationthathewillonlyhaveonebandaid.We       Nunn monitored and quickly took care of.                                      special	needs.	It	has	shown	that	their	           skills.	She	recently	incorporated	              mail@heartkidsnsw.org.au
16 Summer 2010 | Family Support




FamilY
suPPOrt neWs
                        raNdWiCK
                                                                              member                                                        Updates
                           Hello again, and welcome to all of our new
                                                                                                                  On 4th November           angus Duthie was in at CHW           since been back to CHW for
                           families. Once again, I spent some time over
                                                                                                                  Becky howell              for his surgery he is now back       some investigations and we hope
                           at Westmead Children’s in January while                                                underwent a Fontan        at home with Mum and Dad in          she gets back home very soon.
                           Kim was on leave. It was nice to visit the                                             procedure and had         Walgett, stay well.
                           families there and catch up with the staff                                             a lengthy recovery                                             Jordan mildenhall was in for
                           again. I’m now back at Randwick, where we                                              period. “Justine Clarke   Ben exton has had a long stay        another surgery with mum and
                                                                                                                  (Playschool presenter     in SCH and then onto CHW. He         dad by her bedside in PICU she
                           have just been able to get back into the ward
                                                                                                                  and actor) made a         started his “big school” lessons     is now home and doing well.
C2 South. December and January saw the cardiac patients spread                                                    special trip to the       at the hospital schools – it was a   Good on you Jordan.
all over the hospital while renovations took place in some wards.             Becky Howell with Justine Clarke at Edgar Stephen Ward,       different way to start big school
     Please don’t forget to let me know if you are going into Randwick        the Children’s hospital Westmead    Westmead Childrens        but Ben is enjoying it. We wish      terri-anna Papaiaoannou
for surgery or monitoring so I can try and catch up with you. Please          Hospital on 21st January after viewing a YouTube              you well Ben and hope you get        was in for her next surgery with
                                                                              video of Becky Howell singing her songs in the Starlight      back home soon.                      mum and dad by her bedside
keep those updates and photos coming in. We love to hear from you
                                                                              Room. The two sang duets from Justine’s album to the                                               in PICU she has recovered well
and know how all the HeartKids and their families are going.                  delight of the crowd and can be seen on www.youtube.          krystal crutcher now 16yrs           and back home with her family.
     If you are interested in a regional rep role please call me. If you      com/use/Howeller68.                                           went to Westmead Private this        Great work Terri – Anna.
have already a rep in your area, please get in contact and let them               Becky’s parents, Angie and John, brother Charlie          time for another surgery. She
know what events and activities you’d like to be involved in or just to       and sister Ashley are thrilled to have Becky home after       did really well and both Krystal     coralie thurlow one of our
                                                                              a long hospital stay.Congratulations Becky we wish you        and her Mum Tracy were glad          adult heartkids has had a very
have a chat.                                                                                                                                                                     long stay at Westmead Adults
                                                                              all the best.                                                 to get back to Chatham with the
     Don’t forget to keep us updated if you change your email address -                                                                     family. Stay well Krystal.           she is being very brave through    FIRST	DAy	oF	BIg	SCHool	
it is the easiest way to let you know of any local events in your area.       alicia Vukovic was only home for a short time and             Coralie Thurlow one of our adult     her ups and downs, we are          lots of our heartkids started big school this year with
                                                                              came back and had her 2nd stage surgery earlier than          heartkids has had a very long        thinking of her and all her        mum’s and dad’s waving them goodbye and fighting back
     If you don’t receive our monthly e-newsletter, please go to the
                                                                              expected. She delighted everyone by recovering well and       stay at Westmead Adults she is       family, stay strong and get well   the tears of sadness (or of joy). they have conquered
HeartKids NSW website (www.heartkidsnsw.org.au) to register and               is now at home with her big brother. Stay well.               being very brave through her         soon Coralie.                      yet another major milestone in their lives – well done to
keep up-to-date with the latest news and events.
                                                                                                                                            ups and downs, we are thinking                                          all the new kindergarten heartkids we hope you have a
     I look forward to seeing some of you at our family camp. Let’s hope      Kim bumped akiko and Yuna shima in the hospital               of her and all the family,stay       ibrahim abdulkader was in for
                                                                              coming in for a checkup. It’s lovely to see our babies                                                                                great first year of school!
it’s even more fun than last year – is that possible?!                                                                                      strong and get well soon Coralie.    his surgery which went well and
                                                                              getting bigger and growing as they’re supposed to.                                                 is now home with his brother.
                                                                                                                                                                                                                    (photos of new kindergarten heartkids daniel sherlock,
     Keep well,
                                                                                                                                            hayley rogers had her surgery        Stay well                          casey chatteron and Joel cunningham)
Karen	Sherlock senior family support Coordinator                              levi mc cormack was in for a quick visit and is doing         early January and went home
0406 424 620                                                                  well. He is now the big brother to a new baby sister          to her family in orange. She has
                                                                              Keshia.

                        Westmead

                                                                                                                                                      Heart Angels
                                                                              ethan Johnson was in for his surgery which went
                                                                              well and is now back home. We wish him a continued
                         Happy New Year to you all. I hope you                recovery.
                         survived the Christmas period in one piece
                         and have enjoyed your holidays. I had a              alexander murray made it home and then popped
                         month off with my family down the south              back for a quick visit, but is now at home where
                                                                              everyone wants him to stay. His big sister Ellen loves
                         coast and thoroughly enjoyed the break.
                            Life continued at CHW with Edgar
                                                                              having her brother to play with. All the best.
                                                                                                                                                                                 We remember:                                      We wish to pass on
                         Stephens being quieter over Christmas and still
not too busy at the moment. The carpet is being replaced all through
                                                                              Jade Windsor came in for his surgery and stayed a little
                                                                              longer than planned, but has since made it home and we                                             Abigayle Smith 02/9/08 – 1/12/08                  our deepest sympathies to:
CHW with vinyl and it looks lovely, fresh and clean. A small amount           wish him all the best for a continued recover.                                                     Our hearts and thoughts go out to
                                                                                                                                                                                 Rebecca all the Smith family in their             Kate and Will and all their family
of progress has been made in the planning of the Parents’ Retreat
                                                                              georgia lily murphy has been in for treatment for an                                               time of remembrance.                              in loving memory of their heart
room on the ward with Gabbie (NUM) and I pouring over paint charts            infection over the Christmas period, she has since gone                                                                                              angel Willow Shannon Spring-Lewis:
and looking at carpets and furniture. We hope to have things started          home and we wish her all the best.                                                                 Andrew Bennett 20/10/00 – 15/01/04                29/03/2009 – 08/01/2010
very soon.                                                                                                                                                                       Our hearts and thoughts go out to Terri,
    I was in the neonatal unit recently and was astounded at the size         marley tagg came in for her surgery and is now home
                                                                                                                                                                                 Greg and all the Bennett family in their          Belinda and Mark and all their
                                                                              with mum and dad. Stay well.                                                                                                                         family in loving memory of their heart
of a baby born at 26 weeks with CHD. His head was no bigger than                                                                                                                 time of remembrance.
                                                                              Ibrahim Abdulkader was in for his surgery which went
myfist,butthenursessaidhe’safighterandisdoingreallywell.It’s   well and is now home with his brother. Stay well
                                                                                                                                                                                                                                   angel Ayden Peychers: 6/08/09 -
always amazing to realise the incredible work our doctors and nurses
                                                                                                                                                                                 Amy Holloway 30/12/93 – 13/03/98                  08/01/2010
do for our children and we shouldn’t forget all the other staff that help     celina musseme was in ESW for an extended stay, but                                                Our hearts and thoughts go out to
                                                                              has since made it home to be with her family. We wish                                              Tracey, Tony and all the Holloway                 Amy, Nan Suzanne and Timothy and
our children and keep the hospitals running. Thank you.
                                                                              her well.                                                                                          family in their time of remembrance.              all their family in loving memory of
    Mycoffeemorningsareupandrunningagain.They’reonthefirst
                                                                                                                                                                                                                                   their heart angel Leo Keilor: 5/9/07 –
Tuesday and third Thursday in the playroom on ESW. Everyone is                rita abourad was in for her surgery and stayed for a                                               Hamish Howard 22/12/04 – 18/01/05                 4/1/2010
welcome. Hope to see you soon!                                                little longer than was expected, but is now home and                                               Our hearts and thoughts go out to Katie,
Cheers,Kim	Mackie family support Coordinator                                  continuing to improve. Stay well                                                                   Ben and all the Howard family in their
0406 424 627                                                                                                                                                                     time of remembrance
                                                                              savannah hutchings came in for surgery and is now
                                                                              home with mum Leanne. Stay well.
18 Summer 2010 | Merry Christmas                     www.heartkidsnsw.org.au 19




     Both Sydney and Newcastle regions hosted
     a couple of fantastic days for some of our
     families to celebrate Christmas last year.
         Newcastle enjoyed a great day at Speers
     Point Park with the wonderful support of
     Kiwanis. Families enjoyed a BBQ lunch, a
     clown and had a visit from Santa who gave
     all the children a gift. Kiwanis also donated
     a banner for use by the region. We would
     like to thank Kiwanis and the regional reps
     Leanda, Amanda and Kylie who helped to
     organise the day.
         Sydney had a lovely sunny day at
     Bicentennial Park at Homebush. There was
     a sausage sizzle, a clown, face painting and
     jumping castle. Everyone really enjoyed
     the day with the highlight being a visit from
     Santa. We would like to thank Johnson
     Controls for sponsoring the day and providing
     volunteers to pack the bags and help out with




merry
     the setting up and cooking on the day.




                                                                      More	
                                                                      photos	on	
                                                                      next	page




  chr istmas
20 Summer 2010 | Merry Christmas
                                   last year HeartKids NsW sent all members a
                                   survey. this survey was initiated so HeartKids

merry
                                   management could have a clear understanding
                                   in which direction we should be heading for the
                                   future. Based on the 79 responses, here are
christmas                          some of the key points that were highlighted.


                                   SUrvey SayS...
                                      50/50                                                                     our	members	believe	that	we	are	
                                                                                                                doing	exceptionally	well	with	hospital	
                                                                                                                visits,	the	newsletter	and	website,	but	




                                   78
                                                                                                                we	could	improve	emergency	funds,	




                                                               %
                                                                       95
                                                                                Sydney	Metro	and	regional	      hospital	parking	and	meal	vouchers.




                                                                                                                          %
                                                                                NSW	membership	split.




                                   85
                                                                                                3
                                              of	heart	disease	is	congenital                                                of	members	believe	that	




                                                                     %
                                                                                                                            supporting	research	
                                                                                                                            programs	concerned	with	
                                                                                                                            CHD	is	highly	important.


                                                                                                               Three	most	important	types	
                                                                      of	members	believe	                      of	support	are	–	hospital	
                                                                      HeartKids	can	be	of	                     support,	the	newsletter	and	
                                                                      assistance	to	them.                      fundraising	events.

                                                                                                                                   over	half	our	members	
                                                         Funding	for	medical	equipment,	                                           travel	more	than	50kms	
                                                         improving	hospital	facilities	                                            to	receive	cardiac	
                                                         and	seeking	government	or	                                                treatment	with	32%	
                                                         financial	assistance	are	key	                                             travelling	over	150kms.
                                                         areas	where	members	would	
                                                         like	us	to	advocate.




                                   78                          %
                                                                                                      In	the	months	since	the	survey	was	finalized,	
                                                                                                      HeartKids	NSW	is	striving	to	ensure	that	our	
                                                                                                      members’	needs	and	wishes	are	met.	The	following	
                                                                                                      are	some	examples	of	how	we	are	achieving	this.
                                                                                                        P
                                                                                                      •		 roviding	petrol	cards	to	families	who	travel	
                                                                 of	members	have	cardiac	               greater	distances	for	treatment.
                                                                 treatment	at	The	Children’s	           A
                                                                                                      •		 ccommodation	assistance	for	families	who	are	
                                                                 Hospital	in	Westmead.                  from	more	remote	areas	of	NSW.
                                                                                                      •	Meal	vouchers	for	use	at	hospital	cafes.
                                   our	most	valuable	function	to	our	members	is:




                                   47 32%
                                                                                                      •	Providing	care	bags	for	all	cardiac	families.


                                                         %
                                                         support
                                                                                                        P
                                                                                                      •		 articipating	in	fundraising	events	where	funds	
                                                                                                        have	been	requested	to	go	to	research.
                                                                                                        I
                                                                                                      •		 mproving	awareness	of	CHD	by	promoting	
                                                                                                        events	such	as	CHD	awareness	month.
                                                                                                        E
                                                                                                      •		 nsuring	our	newsletter	is	informative	as	



                                    20                  %
                                                                                                        possible	and	includes	relevant	information	for	
                                                                                       research         our	members.
                                                                                                      •	Ensuring	the	website	is	updated	regularly.
                                                         awareness                                      A
                                                                                                      •		 pply	for	funding	to	corporate	business	for	


                                                                   10          %
                                                                               advocacy
                                                                                                        hospital	equipment.

                                                                                                      We	would	like	to	thank	all	of	you	who	completed	the	
                                                                                                      survey.	your	feedback	is	appreciated.
22 Summer 2010 | Acknowledgements                                                                                                                                                                                                                         www.heartkidsnsw.org.au 23

                                                                              THANK yOu... HeartKids NSW




                                                           acKnOWLeDgemenTS
                                                                                                                                           a
                                                                                                                                                                                                  B
                                                                              would like to thank the following

  yes! I’d like to                                                            individuals and organisations for
                                                                              their generous contribution since
                                                                              our last newsletter.
                                                                                                                                                                                                                                                                     pho More
                                                                                                                                                                                                                                                                         t
                                                                                                                                                                                                                                                                     itemos of ne
                                                                                                                                                                                                                                                                          s         w
                                                                                                                                                                                                                                                                      web on our
  become a supporter                                                          INDIVIDuALS
                                                                              N A Adams
                                                                                                                                                                                                                                                                           site
                                                                                                                                                                                                                                                                                !!!

  of HeartKids...                                                             S White
                                                                              Francesco Terenzini
                                                                                                                      c

                                                                                                                                                                       D
                                                                              PR & LM Bootland                                                                                                                                                                                               e
                                                                              GO & JV Harvey
  Please	send	me	more	information		                                           RJ & CM Beaven
  about	HeartKids	and	in	particular:                                          KJ & HL Meyn
                                                                              Susan Momdjian
                                                                              Simone Westcott
  o Becoming a volunteer                                                      Maria Vermunt
                                                                              Mandarin Stars
  o leaving a gift in my will                                                 Matthew King
                                                                              Malcolm Jakes
  o making a regular gift through my bank                                     Danielle Burdack
                                                                                                                  J

                                                                              Danny Alsope
  o participating in fundraising events                                       Stephanie Andreas
                                                                                                                                                                                                                                                                 F
                                                                              Skye Duncan
  gifts can be sent to HeartKids NsW inc.                                     Sheen Family
  please complete the credit	card	authority below and                         Joanne Vidovic
  post	to	us	at	address	below	or fax us on 02 9834 6841.                      Tanja Blunschi
                                                                              Maree Sisson
  HeartKids	NSW		                                                             Tania Batten
                                                                                                                      g
  C/-	Adolph	Basser	Cardiac	Institute		                                       Greg & Barbara Exton
  Children’s	Hospital	Westmead,		                                             P.S Levette
                                                                              Mark and Belinda Peychers
  locked	Bag	4001,	Westmead	NSW	2145	
                                                                              Wanda Yung
  if you would like to contact us please                                      Kate Reader
  Call    02 9294 0800 or                                                     Renae & Heath Downie
  Email mail@heartkidsnsw.org.au
  Fax	    02 9834 6841                                                        COMPANIES
                                                                              Tafe NSW - Hunter Institute                                                                     H
                                                                                                                                                                                                                                                                         K
                                                                              Matthew Trappel T/A Valleywide                     BACK                                      BACK                                                      I
   Name:                                                                      Protective Coat
                                                                              Dedes Restaurant
   Address:                                                                   Tumbarumba Public School
                                                                              Ritchies                            merchandise Order Form
                                                                              Newcastle Vintage Motorcycle
                                                                              Identi Kid                          Item                               Price            Qty                 Total       Personal details
                                                                              Restaurant Balzac
                                                                                                                  a. Paper stickers                  $1.00                                            Name:
                                                                              United Way
                                                                                                                          car bumper stickers        $2.00                                            Address:
   State:                                 Postcode:
                                                                                                                  b. teddy bears                     $10.00
                                                                                                                  c. travel mugs                     $10.00                                           State:	                                        Postcode:
   Phone:                                 Fax:
                                                                                                                                                     $8.00                                            Phone:                                         Fax:
                                                                                                                  d. coffee mugs
                                                               Diary Dates
   Mobile:                                                                                                                                           (4 for $25.00)                                   Mobile:
                                                                                                                  e. caps                            $10.00
   To	use	your	Credit	Card	(please	tick 3	type	of	card)	       north syDney trivia night                          f. kid’s hat                                        Please state
                                                                                                                                                                      colour and size
                                                                                                                                                                                                      Payment details
                                                               When: 20th Mar 2009                                (also available skyblue and pink
                                                                                                                  in infants (50cm) and child
                                                                                                                                                     $10.00                                           To	use	your	Credit	Card	(please	tick 3	type	of	card)		
   o Visa	 o Bankcard        o Mastercard     o Amex           Where: Our Lady of Good Counsel Hall,              (54cm) sizes).                                                                      o Visa	 o Bankcard              o Mastercard          o Amex
   Credit	Card	No:		                                                  Currie Road, Forestville                                                                        Please state size
                                                                                                                                                                                                      Credit	Card	No:		
                                                                                                                  g. t-shirt (s-xxl)                 $20.00
    ___/___/___/___/   ___/___/___/___/ ___/___/___/___/       To RSVP please contact                                                                                 Please state size                ___ /___ /___ /___ / ___ /___ /___ /___ / ___ /___ /___ /___ / ___ /___ /___ /___ /
   ___/___/___/___/                                            Donalda Brown                                      h. singlet (s-xxl)                 $25.00                                           Expiry	Date:
   CVC	(three	numbers	at	the	back	of	the	card)                 02 9453 2107 or 0419 402 399                                                                                                           Signature:	
                                                                                                                  i. collection tins                 free
    ___/___/___/                                               Mother’s Day Lunch anD PaMPer                      J. Pens                            $5.00                                            CVC	(three	numbers	at	the	back	of	the	card)	___ /___ /___ /
                                                               When: 6th May 2010                                 k. new badges                      $4.00                                            Date:
   Expiry	Date:                                                WHERE: Ground floor function room, Children’s
                                                                                                                                                     Postage and handling                 $7.00
                                                                      Hospital Westmead                                                                                                               or	send	us	a	money	cheque	or	order.		
   Signature:	                                                                                                                                       ToTAl                                            Money	orders	and	cheques	to	be	made	
                                                               To RSVP please contact                                                                                                                 out	to	HeartKids	NSW	Inc
                                                               Kim Mackie 0406 424 627 or
   Date:                                                       kim.mackie@heartkids.org.au                                                                                                            HeartKids	Merchandise
                                                                                                                                                                                                      41	Pine	Creet	Circuit,	St	Clair,	NSW.	2759.
Thank
you
  All of us at HeartKids would like to thank
  our sponsors and supporters for their
  generous contributions and support.
  HeartKids would like to thank BP for the donation of fuel
  cards. This will assist some families in hospital with the cost
  of commuting to visit their sick child.

				
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