Learning Center
Plans & pricing Sign in
Sign Out



Spring 2011       Quarterly Newsletter for Victoria and Tasmania     Volume 21 Issue 3

    *         Awareness for HeartKids

    * New RCH opening soon

    * Living Life to the Fullest’

     support      •    awareness        •   research       •       advocacy
                            Matters of the Heart -                                                           Our Team
                            State Manager/CEO                                              HeartKids Victoria Board 2010-2011
                                                                                            * Chairperson: Gary Karatjas
                                We have had another busy quarter since the                  * Vice Chairperson: Shane Larsen
                               last newsletter conducting major events and
                              fundraisers across the state. I would like to                * Treasurer: Warren Larsen
                             thank all those who continue to give selflessly
                                                                                           * Secretary: Lauren Trengove
                           of their time to stage these events. Without our
                          events volunteers and the attendees who support                  * General Board Members:
                        them with their presence and donations, we would                      Natalie Palmer
                     not be able to provide the support services that we do.                  Bill Ellerton
                In fact, not only are we continuing to provide the support                    Karin Burgess
          you all know and expect, we are actually expanding our support                      Kellie Scott
activities and the assistance that we provide.
As an example, we have finalised our agreement with MonashHeart and                       HeartKids Victoria Employees
will be placing a Family Support Co-ordinator on site at Clayton very
                                                                                           * State Manager/CEO
soon. We also continue to provide funding for equipment and training
for the Royal Children’s Hospital. As well as the cooling blanket, that
                                                                                               Terry Hopkins
was featured in the Newsletter recently, we awarded a bursary to Dr Bryn                       0478 085 480
Jones, RCH Cardiologist, at our Gala Dinner. This bursary will support                 
Dr Jones next year as he undertakes a period of study and residency in                    * Support Manager
London to increase his knowledge and skills and consequently improve                          Tracy Stanley
the standard of care that the hospital is able to offer cardiology patients                   0478 091 773
when he returns. We also donated $25,000 from the proceeds of the                     
Run Melbourne event towards Finnan’s Gift to help in the purchase of
an Echo Machine for Cardiology and have just agreed to fund half of an                    * Family Support Coordinators
Echo Machine for the RCH Cardiac Surgery Department. Quite significant                        Sherrie McDonald
achievements that I am very proud of.                                                
In this edition you will be able to catch up on some of the fundraisers that                  Amy Heafield
have helped us to implement these initiatives.                                       
On the 22nd July we held our Special General Meeting and all motions                      * Support Events Coordinator
put to the meeting were passed. We feel this is good for the charity in that                  Lynette McCoullough
it will promote more continuity at an executive management level. We will             
also conduct our Annual General Meeting in October and all members
should have received notice in the mail. We have called for nominations
                                                                                         * Administration Assistant
for Board positions so thank you to all those who have nominated and                        Amy Emmett
want to contribute their skills to help at an executive level.                     

In closing, let me remind you that Cuppa for HeartKids continues in                      * Membership/Newsletter Coordinator
September. Please host a morning tea or Mad Hatter’s tea party to help                      Margaret Patullo
raise funds so our team can continue their great work.                             
Terry Hopkins                                                                            * Newsletter
State Manager/CEO                                                                 
HeartKids Victoria

       HeartKids Victoria proudly supports children with heart
       disease and their families throughout Tasmania.
       For Tasmanian enquiries - please refer to the back page
       for our Tasmanian Branch Coordinators’ contact details.

                                                                                         Permission to reprint any of the personal stories in this newsletter is
                                                                                         required from the author or the Chairperson. Any other articles may be
                                                                                         reprinted with an acknowledgement to HeartKids Victoria.

       Front cover: Polly Porter, winner of                                              Please note that articles published in this newsletter do not imply
                                            The Block, at the Open for Inspection        endorsement and may not reflect overall views of HeartKids Victoria.
       our HeartKids volunteers                                                   with
      Thanks to all who sent photos and                                                  Also note that the opinions expressed in child stories represent
                                         information for this edition.                   personal experiences and that medical details are specific to each
      Contributions are always welcome                                                   case. Although the conditions may appear similar to your child’s,
                                         - send to
                                                                                         other details may differ. Parents requiring more specific information
      High resolution photos (close to 1MB
                                            or above) are ideal for printing.            should check with their child’s cardiologist.
      Thanks to Fuji Xerox and Documen
                                         ts On Call for printing our newslette
      Thanks to Gordon Patullo for post
                                        processing of some digital images.

           Coming Events                                                                In This Issue
                                                                               2    Matters of the Heart
Cuppa For HeartKids in September
                                                                             3-4    Coming Events
Registrations are open for this year’s Cuppa for
HeartKids campaign. Everyone is invited to host a                              5    Nicky’s Story
morning/afternoon tea. More information is available                        6-7     Hospital Matters
on the website
                                                                               8    New Royal Children’s Hospital
We are inviting primary and secondary schools to
host a Mad Hatters Tea Party as part of this year’s                            9    Maddy’s Story
Cuppa for HeartKids activity.                                             10-11     Branch News & Family Outings
Candlebark Farm Family Camp,                                              12-13     Member News & Merchandise
                                                                          14-15     Members’ 21 Year Milestones
This event was advertised in our Winter newsletter and will                  16     HKA News
be held on the weekend of 23rd to 25th September. Offers of                  17     Reflections
places have been made to families so there are no vacancies at
                                                                          18-22     Fundraising and Donations
the moment however if you would like to register, your family
will be placed on a waiting list and you will be contacted if                 23    Become Involved with HeartKids
there is a cancellation.                               24    Diary Dates
Box Hill Miniature Train Day
Date: Saturday 22nd October, from 11.00am
Venue: Corner Elgar & Belmore Roads, Box Hill North.                   FunFlight 2011
Melways ref: 47 B4                                                     Date: Sunday 13th November
Thanks to the generosity of the Kiwanis Club of Waverley and           The following aero clubs will be
the Box Hill Miniature Train Society, we are able to offer our         volunteering their services (planes, fuel
families a free fun day out. The event includes a free sausage         and pilots) for FunFlight this year:
sizzle lunch starting at 11am with free train rides between 12
noon and 1 pm. (No open-toed shoes to be worn on the train).                 Lilydale         Tyabb          Latrobe Valley
                                                                             Horsham           Bendigo       Echuca
Meet in the park next to the train station in Belmore Road at
11.00am. See our HeartKids representative who will record                    Barwon Heads
your family’s name and provide you with a name badge. There            The event will run from 9.30am–3pm. However, to avoid
will be time to play on the playground before and during               families with young children having to wait for extended
 lunch, so make sure you bring a hat if the weather is warm.           periods of time for their turn to fly, they will each be given
 BYO picnic rug, chairs and tea or coffee. Don’t forget your camera.   their own arrival time, between 8.30am and 2pm.
 To register for this event, please make a booking by 8th              Lunch will be provided along with child-friendly activities,
 October at Please only book for                which will vary from club to club.
 your immediate family so we can accommodate as many                   Last year the Melbourne aero club flights were cancelled
 members as possible.                                                  due to poor weather. Families who were cancelled last
 For further details or cancellations, contact Lynette on 9333         year will have priority if they would like to fly this year. The
 1586 or 0418 548 879 or email           second priority will be families who have not attended
                                                                       FunFlight before and lastly will be families that have
 Myuna Farm Day                                                        attended before and would like to attend again – numbers
 Date: Sunday 6th November, 10am - 2pm
                                                                       Register your expression of interest on the TryBooking
 Venue: Myuna Farm, 182 Kidds Road, Doveton
 Entry to the farm by gold coin donation
                                                                       If you don’t have access to email, please phone Amy on
 The Kiwanis Club of Sunbury are kindly sponsoring this function,
                                                                       0411 552 264 to register.
 so come and enjoy a great day out at Myuna Farm.
 Your family will receive some free train and pony rides and you
 will be able to visit the animals on the farm including the baby
                                                                       Inaugural City to Sea
 nursery. A magician, face painter and balloonologist will also        Date: Sunday 13th November
 be present to entertain the children. A free barbecue will be         Melbourne now has its equivalent of the Sydney City to
 provided and will give families an opportunity to meet while          Surf.
 eating lunch together.                                                Take part in the inaugural City to Sea on Sunday
 This event is for immediate family only as places are very            November 13, 2011 and create your hero page to
 limited and we aim to accommodate as many HeartKid                    fundraise for HeartKids Victoria.
 families as possible.                                                 The 14km course starts at the Arts Centre in the CBD,
  Register via by 8th October 2011.             travels along St Kilda Road, around the Albert Park Grand
                                                                       Prix track and on to a spectacular finish by the sea in St
  Christmas Parties and Teen Camp 2012 -                               Kilda.

  please see page 4                                                    For further details

                   Coming Events in November - January
Christmas Parties                                                     Hobart Christmas party
                                                                      If you and your family would like to join in with other HeartKids
Melbourne: Saturday 26th November 10am – 2pm                          families from Hobart for a local Christmas party, please contact
Come and enjoy a day out with other HeartKid families at              Paul Hyland for further details, either by phone: 03 62478435 or
Melbourne Zoo and celebrate Christmas. As a gift to your              0418 561 504 or email:
family, we will give each HeartKid and Heart Angel family free
entry to the zoo (immediate family members only). If you would
like grandparents, friends and extended family to join you,
                                                                      Teen Camp 2012 in Sydney
they can book at a discounted rate of $20 adults (16 years and        Date: Friday 20th January - Monday 23rd January 2012
over). All children under 16 will be free. If they have ‘Friends of   Registrations will commence in mid September for the 2012
the Zoo’ membership, there will not be any charge to enter so         HeartKids Teen Camp.
please make sure you indicate that on the booking site.               The camp is open to all HeartKids and their siblings between
Please register all people attending on www.trybooking.               the age of 12 - 20 years.
com/NEU If you are registering extra people other than your           Location: Broken Bay Sport and Recreation Centre,
immediate family, please be ready to pay via credit card.             Hawkesbury River, just north of Sydney NSW
For further information, contact Lynette on lmccoullough@             Come along for 3 days of fun filled activities including or 9333 1586.                                        abseiling, rock climbing and ropes course, archery, basketball,
Geelong: Saturday 3rd December 2pm - 5pm                              tennis, canoeing, kayaking, swimming.
Where: Grovedale Memorial Hall, Reserve Rd, Grovedale                 You will meet lots of new friends who are all heart kids and
What: Kids disco hosted by DJ Mitch (              have experienced a similar journey as you.
Wear: your best disco outfit or favourite dress-up.                   Please check our website for details. Registrations will be
RSVP: November 20th to Libby Gibson, HeartKids Coordinator            made online:
Geelong, on (03) 5250 2439 or email
Tasmanian Special Children’s Party
Date: Sunday 6th November starting at 11am
This year, the event will be held at the Derwent Entertainment
Centre, Hobart. For further details and to book a place, please
contact Kylie Smith by 1st October 2011 on kylie.smith@ or (03) 6393 6240 or 0448 983 587.
Kylie is our Launceston coordinator but she is taking bookings
from all Tasmanian families to attend this party, which alternates                                                            Teen
between Launceston and Hobart.

                                          paign                                                                  2011
           Cuppa for HeartKids School Cam

                                                                                                                Mad Hatters
                                                                            and secondary schools to host a
                                          This year we are inviting primary                 HeartKids activity.
                                                       Tea Party as part of the Cuppa for
                                                 We would appreciate it if mem   bers could encourage their schools
                                                              to host a Mad Hatter’s Tea party
                                                                               the web site:
                                          To find out more and register, visit
                                                Nicky’s Story
From the time of my conception, my moth-                                                           club. Now all things being equal, this
er always knew something was wrong. I am                                                           should’ve been the end of it, but it was
one of seven children and I am the only one                                                       then that I got a pacemaker infection –
who threatened to miscarry and she was                                                            ARGHHH! After spending 6 weeks in
sick with me throughout her whole preg-                                                           hospital over Christmas and New Year,
nancy.                                                                                            hooked up to some pretty potent anti-
                                                                                                 biotics, the infection persisted, so it in-
In 1974 when I was born, there were no
                                                                                                 volved ANOTHER entry into the zipper
prenatal ultrasounds, so I was sent home
                                                                                                 club to remove all the leads (from about
with a clean bill of health, despite my
                                                                                                 13 years worth of pacemakers) and ‘re-
mother’s ‘feeling’ that something wasn’t
                                                                                                fit’ me. YEP - it worked and the SVT’s all
right. My mother’s uneasy feeling contin-
                                                                                                but stopped and I got on with my life as
ued whenever she tried to feed me and I
                                                                                                best I could.
went blue. So, after many comments of
‘you’re being an over-protective mum’, a                                                         I was still concerned that I couldn’t get
doctor finally diagnosed me with Trans-                                                         back into my exercise and after another
position of the Great Arteries and said I                                                       trip to Melbourne (I live about 4 hours
probably wouldn’t survive.                                                                      drive away), I was told to lose some weight
                                                                                               and that should make things better. So off
But by the grace of God, I had life sav-
                                                                                               I went, as best as I could, to huff and puff
ing surgery the same day, which kept
                                                                                               up hills and mountains and through sheer
me going until I was old enough to have
                                                                                               grit and determination, I lost 30kg. Sadly
the Mustard Repair when I was 18 months
                                                                                              my fitness levels were still very low and I
old (in South Australia).
                                                                        started to swell up around my face, neck, hands, etc.
While growing up, the only way I knew I had a heart condition
                                                                        After loads of tests and such, my poor right ventricle is strug-
was that I had annual check-ups and I couldn’t run as fast as the
                                                                        gling (in my heart this is the ventricle that does all the work)
other kids.
                                                                        and my SVC is blocked with scar tissue and remnant leads that
When I turned 13, my health changed - I became very ill with            couldn’t be removed in surgery. Sadly due to where the block-
SupraVentricular Tachycardia (SVT), which basically is a very fast      age is situated a stent is not possible and basically I have to
heart beat. As time wore on, these SVT’s could not be controlled        ‘wait’ for technology to catch up.
with medication, so at the age of 18, I received my first pace-
maker. This also became my transition from the children’s hospi-
tal to adult care - a bit scary to happen all at once. I kept looking
for the mobiles on the ceiling and the giraffe motifs and murals
placed at strategic places along the corridors (I personally think
                                                                             ‘Living life to the full’
adults would love them too). The pacemaker stabilised me for
many years and my SVT’s became almost obsolete.
                                                                        I had to resign from my job which was hard, but I got so bored
I met the most amazing man, Andrew, and married. We were                sitting at home thinking about my health, that I decided to start
thankful to have three heart healthy children, although sadly our                        my own business - I get to sit down when I need
first born son was born at 25 weeks gestation and died three                               to and I have some lovely friends who help me
days later.                                                                                  on bad ‘heart’ days.
After the birth of my third child, I couldn’t seem to                                         So while I wait, I struggle, but I live – and
recover from the pregnancy. I tried to get back                                                live to the full. I have met some wonder-
into exercise (I loved to jog and do step                                                         ful people via the HeartKids Facebook
aerobics), but I physically couldn’t do                                                             page and various groups on Face-
it. It all became too hard so I just                                                                  book. I have even met some adults
gave up. Sadly I became quite                                                                          now who have had the same op-
overweight, which didn’t help the                                                                       eration as me!
problem either.
                                                                                                          Despite my limitations I love
This is when the SVT’s started up                                                                          living. I am 36 years old
again and were worse than they ever                                                                          and plan to be around a
had been. I think I must hold a record                                                                         WHOLE lot longer.
for some 350 SVT’s in just five days. It was
                                                                                                                 I am excited about get-
then that I was transferred to the Royal Mel-
                                                                                                                   ting involved in Heart-
bourne Hospital from Adelaide.
                                                                                                                     Kids and especially
I needed to upgrade my pacemaker, but during                                                                           interested in sup-
this procedure it was found that I had a blockage                                                                        porting     adults
in my SVC (Superior Vena Cava - main vein into the                                                                        who are ‘Grown
heart) so the pacemaker couldn’t be implanted in                                                                            up’ heart kids.
the ‘normal’ way. I was referred to a surgeon to put in
an ‘epicardial’ pacemaker - this means the leads are at-                                                                      Nicky XX
tached to the outside of the heart rather than through the
veins. Of course this meant another entry into the zipper
MonashHeart Thanks its Supporters
Over the last few years MonashHeart has sought to strengthen        Kiwanis
its fundraising capability, not only through new relationships      In a wonderful gesture of support of MonashHeart’s paediatric
with some wonderful community service groups but also               echocardiogram services, the Brighton Kiwanis Club donated
through participation in community fundraising events, to raise     $1500 for the purchase of three much needed, highly accurate
special funds which have enabled many purchases to improve          medical grade baby weigh scales. The addition of these new
our heart kids services.                                            baby scales at each of our sites represents a vast improvement
Rotary                                                              in our ability to accurately weigh a baby before a heart
                                                                    ultrasound, ensuring highly accurate measurements can be
All three Rotary Clubs where our three service sites are located,
Berwick, Dandenong and Clayton, have made impressive
donations to enable the purchase of items to improve the
experience of children coming in for an echocardiogram. At
Casey and Dandenong we were able to purchase and install
new child friendly privacy curtains, complete with colourful
farm animals to cheer up our otherwise bland scanning rooms -
brightening up our rooms and our kids!

                                                                    Chain Reaction
                                                                    It was ‘support for support’ in our relationship with children’s
                                                                    charity Chain Reaction earlier this year,
                                                                    when MonashHeart provided free
                                                                    cardiac screening of cyclists preparing
                                                                    to participate in the 1200 kilometre
                                                                    ride from Sydney to Melbourne. The
                                                                    subsequent ride in March 2011 by
The Rotary Club of Clayton donated a flat screen TV and blu         MonashHeart cardiac technologist
ray DVD player to our MonashHeart Clayton site, assisting in        Nick Youngs and another 43 amazing
occupying our little ones while they have their echocardiogram      riders, raised an astonishing $1 million
and avoid the need for the echocardiogram to be performed           for the purchase of Victoria’s first MRI
under sedation.                                                     compatible incubator for the neonatal
                                                                    intensive care unit at Monash Medical


                                                                    Run Melbourne
Rotaract                                                            In July, despite the wintery weather, staff from across
MonashHeart was the beneficiary of last month’s hugely              MonashHeart, Monash Children’s and Southern Health got their
successful Monash Rotaract trivia night. Over 200 trivia buffs      fitness gear out and participated in Run Melbourne, raising
attended this fun night which raised $3360. With these funds an     over $30,000 for the purchase of a cardiac monitoring system
additional oxygen saturation monitor will be purchased for our      for the paediatric wards at Monash Medical Centre. Along with
paediatric service at MonashHeart Dandenong.                        other donations, this $100,000 purchase will mean that children
                                                                    no longer need to be admitted to our adult cardiac care unit
                                                                    for heart monitoring and instead can be monitored in either
                                                                    of our two paediatric wards, with ECG rhythm transmitted
                                                                    to the cardiac care unit under the watchful eye of the very
                                                                    experienced cardiac nurses there.

                                                           Polly and Waz visit Cardiac War
         RCH Outpatient                                                                 ed and
                                                           The Block’s Polly & Waz visited our
                                                                                                 ward. The visit was film
                                                                                              ” episode of The Block.
                                                           aired on the “Where are they now
         Appointments                                                                           of their time making sure they vis-
                                                           Polly & Waz were extremely giving                                        r.
         Leading up to and during the move                                                     ng them all a HeartKids teddy bea
                                                           ited every patient on the ward, givi
         to the new RCH on Wednesday
         30th November, some cardiac
         outpatient clinics will be reduced or
         even cancelled.
         Clinic hours will return to normal by
         12th December 2011.

             IN HOSPITAL
       A special hello
                       and our very
          wishes to all               best
                        the heart kid
        who have be                   s
                       en in hospital
           the last three             in

        RCH Coffee Mo                       ilies
                        d outpatient fam
       All ward, ICU an               ffee each
                      join us for co
      are welcome to                       in the
     Thursday from 10                       rn left
                         the 7th floor - tu
     Fa mily Lounge on                         e!
                           lift. See you ther
        when leaving the

                                                                                                                      any, and
                                                                                                   Waz visiting Britt
                                                                                 Here’s Polly and              and her parents
                                                                                                  th baby Yve
                                                                               above, they are wi

Melbourne Storm in Ward 7W
Our friends at Melbourne Storm continue to be wonderful supporters.
Recently HeartKids Ambassador Robbie Kearns visited the ward with Melbourne
Storm players Matt Duffie, Maurice Blair and Justin O’Neill. The celebrity visits
are enjoyed by our patients, families and staff.

                                                 The Storm players posed for a photo with Liam (left) and Levi (right)                   7
                                 New Royal Children’s Hospital
A snapshot of what to look forward to
     The outside of the new RCH has been designed with the
     parkland in mind, using colours from the trees and nature
     around the hospital. The sunshades on the building are called
     petals. The colours of the petals were chosen based on the
     leaves and bark on trees in Royal Park—green petals show
                                        where the main entrance
                                        is and red petals show the
                                        emergency entrance.
                                         Once you get inside, you’ll
                                         find the hospital’s central
                                         area, called Main Street. It
                                         will have a range of retail and
                                        food outlets, a two-storey
                                        coral reef aquarium and
                                        breath-taking artwork. It will                              Front entrance
                                        also provide easy access to
                                        anywhere you need to go,
                                        including the hospital wards
                                        and Outpatients.
                                          Eighty-five per cent of
                                          inpatient rooms will be
                                         single, which is great for
               Main Street               privacy but still allows staff
                                         to easily see into rooms to
                                         ensure patient safety. The
    rooms are large and bright, and will have storage facilities,
    internet access, a state-of-the-art entertainment and information
    system and a couch that pulls out into a bed for parents.
    Eighty per cent of the rooms will look out onto the parkland,
    courtyards or gardens.
    All outpatient services, including check-in, billing, treatment
    and appointments will be in the one area to make life easier for                The two-storey coral reef aquarium takes shape
    patients and families.
There will be a bigger and better Family Resource Centre, a
multi-faith centre, interactive displays, lots of activity areas and         new RCH, with over 2100 underground car park spaces
many beautiful outdoor areas.                                                (double the existing number) and a super tram stop at our
                                                                             front door, providing easier access for wheelchairs and
New interior design will make it easy for families to find their             prams.
way around the new hospital. It will also be easier to get to the            To help make wayfinding around the new RCH easier for
                                                                            patients and families, each level of the new hospital will
                                                                            have a theme. The RCH themes include underground,
                                                                            beach, earth, forest, treetops, mountain tops and sky.
                                                                            Themes are child-friendly and will appeal to all ages.
                                                                            Each hospital ward will also be named after an Australian
                                                                            native animal. For example, Level 3 Cardiac and Surgical
                                                                            Care ward will be known as Koala ward – it is located on
                                                                            the Tree Tops level (Level 3).
                                                                            The use of animal names for the wards is one of the child-
                                                                            centric wayfinding strategies to make the navigation
                                                                            around the hospital as easy and enjoyable as possible.
                                                                           It is intended that patients of all ages and multicultural
                                                                           backgrounds will use the animals as a landmark.
                                                                           Each ward will feature graphic illustrations relating to
                                                                           the theme. For example Level 3, otherwise known as
                                                                           Tree Tops, is representative of the Otway Ranges. The
                                                                           illustrations and ward themes are inspired by regions of
                         Inpatient bedroom
                                                                           Victoria, to reflect the RCH patient base as many patients
                                                                           come from regional and rural Victoria.
This article was written by RCH Corporate Communications

                                          Maddy’s Story
Hello, my name is Maddy!                                             The stay in hospital was horrible.
                                                                     I couldn’t eat or drink for three
On the 25th of December 1995, I was born with a life                 weeks and because of that I
threatening heart condition. I have had five open heart              had to have the nasal gastric
surgeries throughout my life and will continue to have more          tube put in. For a while I
as I grow older.                                                     couldn’t do things by myself.
Just two hours after I was born, I stopped breathing. I was          I couldn’t walk because I was
put in ICU and I was monitored but the doctors didn’t find           in so much pain but I just
anything. When I was leaving the hospital I was checked               thought positive and never
by the doctor. He discovered that I had a heart murmur.               gave up and I got through
From there I was diagnosed with Mitral Valve Stenosis. The            it all.
 next day I had to get a few tests done and they found out            Today I live my life to the
 I had medium to severe heart failure. As a result I was put          fullest. I don’t let my heart
 on medicine to try and control it but my parents were told I         condition get in the way of my
 needed surgery.                                                      life even though I’m not allowed
                                                                      to do certain things like get piercings,
                                                                       tattoos or play contact sports.
                                                                       My experiences have inspired me to help HeartKids so
                                                                       I have been fundraising for over six years – making and
                                                                       selling jewellery and selling HeartKids and RCH auxiliary
                                                                                                                  In July 2011 I
                                                                                                                  completed my
                                                                                                                  work experience
                                                                                                                  placement at the
                                                                                                                  Royal Children’s
 I had my first open heart surgery in July 1996 to repair my                                                      Hospital working
 Mitral Valve because I couldn’t keep my food or drink down                                                       with Auxiliaries
 and even though I was fed through the nasal gastric tube, I                                                      and the Pathology
 just kept losing weight as my heart was working too hard.                                                        Department.
 In early August 1996, I had another operation to try to repair                                                 Having a heart
 my Mitral Valve again but it didn’t work so in late August                                                     condition isn’t all
 1996, I had another repair of the Mitral Valve and this time                                                   bad! I have had
 the surgery was successful. From start to finish I was in                                                      so many friends
 hospital for 4 months but then in and out for 3 years. I left
 the hospital with lots of medicine and was ok for a while.           and heard some amazing stories. If it wasn’t for the doctors,
                                                                      nurses and my surgeon I wouldn’t be here today and I am so
                                   When I was one year old,
                                                                      grateful for what they have done for me that words cannot
                                    I started to pass out. It
                                                                      express it. I owe them my life. They are such amazing people.
                                    happened a few times. I
                                     was in major heart failure       It was also my family and friends that helped me get through
                                     and was scheduled for            it. If it wasn’t for them I don’t know what I would have done.
                                     surgery two days later. I        I love them all so much and would like to thank them all
                                     had my surgery in August         for being there for me, especially my Mum and Dad. Also
                                     1998. I had my mitral valve      I would love to thank my best friend Josephine. She has
                                      replaced with a prosthetic      always stuck by me through the hard times. She’s not a heart
                                      valve. As a result I was put    kid but I feel she understands what we go through.
                                      on warfarin.
                                    I was 14 years old when
                                    I went into hospital for
                                     stomach issues. I was in
                                     hospital for a few weeks
                                     while they tried to find the
                                     problem. I was told I was
                                     in heart failure again and I
  would have to have open heart surgery in ten days to replace
  my mitral valve. On the 29th of September I had my surgery
  which took nine hours. While in surgery the anaesthetist
  found that a much-needed drug caused me to start fitting.
  On 7 West I was very sick - I had a stomach bug from surgery
  and the medication. My stomach didn’t work, my bowels
  didn’t work and my body didn’t let my medication work.
  Then I got pancreatitis which was so painful I couldn’t move.         Editor’s Note: Maddy has had unusually complicated experiences
  So what was supposed to be a 10 day stay turned into more             and it is inspiring that she is so positive. HeartKids sends a big
  than a 6 week stay.                                                   Thank You to Maddy for her dedicated fundraising work.

         Congratulations!                                                            Branch News
                                                                      HeartKids has a number of Branches around Victoria and Tasmania.
                                                         You are welcome to contact your local Branch Coordinator to

                      New Babies                                     introduce yourself. Some of our Coordinators are organising support
                                                                      or fundraising days and you are welcome to be involved. Please
         Congratulations and our very best wishes to all these       see contact details on the back page of this newsletter and on our
 families who have welcomed new babies in recent months.             website,
                                                                     Our Thanks to Branch Coordinators .....
 Sharon and James Robertson announced the arrival of HK
   Elizabeth on 6th January 2011. A baby sister for Michael.          We really want to thank Ali Burns, who is retiring from the role of
 Shandelle and Robert Parkes have welcomed their baby                coordinator of our Inner City coffee morning. Members of this
       HK Andrew (Drew) 31/1/2011, a brother for James.              group enjoyed catching up at the museum, zoo and scienceworks
                                                                     and it was great that Ali could arrange this for these families.
     Safia and Ahmed Hashi announced the arrival of their 
                                                                      We thank Clare Taylor for her time and effort in the role as
 new baby HK Isir on 28th February. A sister for Hannan.             coordinator for Warrnambool. Clare is retiring from the role and we
   Terese and Angelo Dal Santo have announced that they              wish her all the best.
 have a baby daughter, HK Lucia, born 14th March 2011.
                                                                     We are pleased that Joanne Arrowsmith is taking over the role of
     Jen and Phil Robertson welcomed HK Jasper Scott                 coordinator for the Pakenham area. Thank you Jo!
          Robertson who was born on 23rd March 2011.                 The Pakenham coffee mornings will be held on the first Wednesday
              A baby brother for big sister Kirralie.                of the month at 10.30am at Monkey G’s Webster Way, Pakenham.
                                                                     Contact Jo Arrowsmith on 59 677 083 or
 Nicole and Mick Arrowsmith and big sisters Talia and
    Molly have welcomed baby HK Jedd on 14th April 2011 
 Quintin and Vanessa Stone are delighted to announce                                  Cuppa for HeartKids
    the arrival of Alexander Lucas Stone on 21st April 2011,         Rocotillos Cafe Cuppa For HeartKids Mad Hatters Tea Party
              a little brother for Lucas (heart angel).                            Date: Saturday 17th September 2011
     Stuart and Regina Reid have welcomed HK Damon                                    Where: 36 Wells Street, Frankston
        Jordan, born 12th of April 2011, baby brother for                                   Time: 9:30am - 10:30am
                          Jacob and Lucas.                               Details: Crivelli coffee/tea & cakes plus a Mad Hatters Hat
                                                                                            Decorating Competition
 Kate and James Odd announced the arrival of HK Emma
    on 11th May 2011. A baby sister for Georgia and Isaac.             Cost: $5 per person; all proceeds donated to HeartKids Victoria
 Hayley and Adam McNamara have a new baby HK Asha,                                       Phone: Irene on 0413 299 209
          born 16th May 2011. She is a sister for Tanner.                                   BOOKINGS ESSENTIAL
     Melanie and Luke Gillies announced the arrival of HK              Our Wonthaggi group are holding a Cuppa for HeartKids
 Aiden on 26th May 2011. A baby brother for Sebastian.
                                                                                  Date : Monday 26th September 2011
        Lisa and Shane Hack welcomed into the world a                                   Time : 10.30 am – 12.30 pm
        baby BOY! HK Eli Alexander born on 15th June.                      Location : The Fun Shed, 91 Settlement Road, Cowes.
           A brother for Zoe, Zara, Zanthea and Zina.
                                                                      Bookings and more information please call Cath on 0429 325 643
       Spencer William Cowley was born 4th July, a very
     healthy 10lb 2oz! Lyndall, Richard, HK Mia and Theo
                        (especially!) are thrilled.           
   Carol and Brendan Mustica welcomed new baby HK Asha 
 on 6th July. Sister to Ally (dec), Zach and Oliver (dec).
 Ayesha and Rafe Horsington have welcomed HK Clancy,
                                                                        Play Group
                                                                        Hea rtKi ds Vict oria will com men
     born 6th July 2011. A baby sister for Saxon and Layla.                                                  ce a wee kly pla ygr oup in
                                                                        Bun cle Stre et, Nor th Me lbo urn
                                                                                                             e sho rtly.
    In each edition of the newsletter we like to welcome any           We will mee t from 12:1 5pm –
                                                                                                            2:15 pm on Frid ays for
     new babies who were born in the last three months.                chil dre n age d 0-5 yea rs. We will
                                                                                                               be join ed occ asio nall y
                                                                      by NG Tub e Kid s.
 If you have a new addition to your family (heart child or            Ple ase reg iste r you r inte rest in
    sibling) and would like the baby’s birth announced in the                                                atte ndi ng by ema iling
                                                                       hea rtki ds@ hea rtki ds.o rg.a u
              newsletter, please send us the details.
                                                                      If you are inte rest ed in volu nte
                                                                                                             erin g to help run the
                                                                      pla ygr oup ple ase sen d an exp
                                                                                                           ress ion of inte rest to the
                                                                      abo ve ema il add ress .
                   Happy Birthday!                   
            A very ‘Happy Birthda
                                         y’ to all the heart
               children and their fam
                                            ily members
             celebrating birthdays
                                          during Spring!

                                              Family Outings
                                  Echuca ‘Kids in Character’ Carnival Fundraiser

Whether it was having their face painted, a pony ride, a sing         Organisers Tracey and Steven Hard said it was fantastic to see
along in the karaoke tent, digging for a dinosaur or edge slot        so many families come from all over Victoria to have fun and
car racing, all the kids had a great time at the 'Kids in Character   show their support. Also great to see the effort families went to
Carnival Fundraiser' held in Echuca.                                  in dressing up as their favourite characters.
Local Ventriloquist Darcy Elliott entertained the crowd with          A special thank you to all the volunteers on the day who were
some great performances.                                              dressed as clowns, which also added to the carnival feel.
Despite the rain, everyone who attended had a great time              A raffle was drawn on the day and all the kids received a goodie
and over $2000 will go to HeartKids Victoria for much needed          bag and balloons.
research and equipment.

 Coffee Mornings

                                                                                                          Out and about at
                                                                                                          Coffee Mornings!

                                                 Member News

     Circus Quirkus
     Thanks to the Rotary Club of Preston and generous local businesses,
     number of families were treated to a day out to watch Circus Quirkus
     again this year.

     The show was aimed at providing circus style entertainment that in-
     spired fun and excitement - a show so full of energy and finesse that
     who attended truly had their spirits lifted.

     See the Circus Quirkus website for more details about the show:

                                                                                      Prices for our merchandise:
                                                                                      (Anticlockwise from centre photo)
                                                                                      Teddy Bears, approx 26cm high, $20
                                                                                      Umbrellas $30
                                                                                      Travel Mugs, approx 15cm high $5
                                                                                      Adult Polo Shirts $20
                                                                                      Child’s Polo Shirts $15
                                                                                      Caps, available in red, white or navy, $10
                                                                                      Pens, available in red or blue, $5
                                                                                      Child’s Bucket Hat, in Pink, Sky Blue, Red or Blue
                                                                                      in sizes S (50cm) M (54cm) L (58cm), $10
                                                                                      Money Collection tin, Free, to place on shop counter
                                                                                      Lapel Badges, approx 2cm high x 1.5cm wide; $4
                                                         Print 118x130 mm
                                                                                      Greeting Card, blank, with red envelope, $2

                                                                                      Pettiskirts & Tops
                                                                                      The skirts and tops are available to preorder.
                                                                                      Prices & details are:
                                                                                      SKIRTS (Adjustable Waist)
                                                                                      Age 0-1 $30.00
                                                                                      Age 1-2 - 20.5cm Long, Waist is 45.5 - 55.5cm $ 40.00
                                                        Heart Kids                    Age 3-4 - 25.5cm Long, Waist is 48.5 - 58.5cm $ 40.00
                                                                                      Age 5-8 - 30.5cm Long, Waist is 51 - 61cm $ 40.00
     To order merchandise please contact Amy Emmett    50 x black; 50 x black/white
                                                       PMS 300 C,PMS 485 C

     E: or T: 9329 0446
                                                                                      Age 1-2 - 20.5cm Long, Waist is 45.5 - 55.5cm $ 25.00
                                                                                      Age 3-4 - 25.5cm Long, Waist is 48.5 - 58.5cm $25.00
                                                                                      Age 5-8 - 30.5cm Long, Waist is 51 - 61cm $ 25.00
                                                                     Member Survey
         In late 2010 the HeartKids Victoria Board established a sub-committee to develop and then activate a survey of members
         to help with understanding what services members feel are important. This would then help the Board to make decisions
                                      in governing HeartKids and place priorities on those initiatives.

  The Survey consisted of twenty-eight questions and was sent                           In addressing each of these Core Findings the Board have con-
  to just under one thousand members. One hundred and forty                             tinued to focus activities to ensure alignment. For example:
  responses were received and the results were quite clear.
                                                                                        1. The importance of Support as a priority
  Firstly, the main reason members told us they join HeartKids is                       	 •	Employed	2	new	Part	Time	Family	Support	Coordinators
  to receive Support (50.7% of participants responded so), and                          	 •	Increasing	our	Support	at	RCH	to	cover	weekends
  rated our provision of Support, as the most valuable thing we
  do. When you consider that 89% of recipients were Heart Fami-                              	
                                                                                        	 •		 greed	with	Monash	Medical	Centre	to	establish	a	Family-
  lies this is a compelling guide as to where we need to focus our                           Support Coordinator at MonashHeart for the first time
  efforts. It was also clear that in-hospital Support was the most                           E
                                                                                        	 •		 xpanded	the	Support	offerings	we	provide	to	families	at	
  important of all the Support services we offer followed by provi-                          the Royal Children’s Hospital
  sion of this Newsletter.                                                              	 •	Exploring	the	possibility	of	a	State	Teen	Camp
  Secondly, the majority of members saw Awareness and Advo-                                •I
                                                                                        	 	 		ncreased	frequency	of	our	branch	Coffee	mornings;	our	
  cacy, particularly improving facilities at the hospital and funding                        newest group is starting in Wonthaggi with a Cuppa for
  equipment as extremely valuable activities for HeartKids to be                             HeartKids event in September
  involved in. Research was also seen as a very relevant activity.                           A
                                                                                        	 •		 ppointed	a	Board	Member	to	act	as	Volunteer	Coordinator
                                                                                        2. The importance of raising Awareness
                    Percentage who rate our services as Extremely Valuable                   R
                                                                                        	 •		 an	Awareness	program	in	February	using	television,	radio	
                                                                                             and print media featuring Glenn Archer and regional Heart-
         Working with RCH
                                                                                             Kids families
                Awareness                                                                    A
                                                                                        	 •		 ctively	promoted	HeartKids	Awareness	day	–	14	February
                                                                                        	 •		 ngoing	promotion	of	HeartKids	focusing	on	HeartKids	
                                                                                             events and activities, such as Run Melbourne and High
                 Advocacy                                                                    Tea, as well as continuing human interest stories featuring
                                                                                             HeartKids families
                                                                                        	 •		 ave	been	chosen	as	Charity	of	Choice	by	organisations	
                                                                                             such as the Country Women’s Association of Victoria
                            0           20         40         60             80   100
                                                                                        3. The importance of Advocacy, particularly improving facili-
                            Extremely Valuable             Of little Value
                                                                                           ties and funding equipment at the hospital
              Question 13 - Please rate which of our core functions                          D
                                                                                        	 •		 onated	funds	towards	Finnan’s	Gift	to	buy	an	Echo	Ma-
                   you consider to be “Extremely Valuable”                                   chine for Cardiology at RCH
                                                                                        	 •		 ommenced	working	on	buying	another	Echo	Machine	for	
  Another finding that was important for the Board to recognize                              RCH; this time for the Cardiac Surgery Department
  was that the membership is so broadly based geographically.                           	 •	Purchased	a	cooling	blanket	for	Intensive	Care	Unit	at	RCH
  When recognizing the diversity of postcodes offered in response                            I
                                                                                        	 •		ntroduction	of	an	Annual	HeartKids	Bursary	to	help	RCH	
  to the question “What is your Postcode?” we ran a check on the                             improve their level of care. The first recipient, Dr Bryn
  entire membership and found that over 25% of our membership                                Jones, will complete a formal three month Cardiac MRI
  is located in regional Victoria and other states of Australia. We                          course combined with a clinical attachment to the cardiac
  keep this in mind when planning activities and our Branch Coor-                            MRI unit at the Great Ormond Street Hospital for Children,
  dinators are available to help members in many areas.                                      London, from 16 April 2012 to 6 July 2012

                                                                                        Other Key Results of the Survey were:
                                Geographical Area of HeartKids Victoria Members
                                                                                        	 •		 ajority	of	Membership	have	been	members	for	1	–	10	
                                                                                        	 •	Majority	of	Heartkids	are	aged	between	1	–	12	years
                                                                                        	 •		 ajority	of	Membership	have	attended	Heartkids	Functions	
                                                                                            ( 77 % )

         60                                                                                 S
                                                                                        	 •		 trong	Interest	in	both	Support	group	for	Siblings	(	60	%	)	
         40                                                                                 and State Teen Camp ( 53% )
                                                                                        We wish to thank all those members who answered our survey
          0                                                                             and seek greater participation in our next survey and look for-
                                                                                        ward to receiving your views and comments.

                                                                                        Karin Burgess
                                                                                        Board Member
                                                                                        Convenor of Survey Sub-Committee
                      Question 1 – What is your Postcode?
                      Some more Members share .....
Caroline Webb
I was born 5 weeks early on July 1st 1990. On the day I was dischar
during a routine check up, a heart  murmur was detected. This was the start
of my association with the RCH, Dr Wilkinson and Dr Mee who perform
open heart surgery  when I was three months old for a VSD and blocked
                                                                    h, never
I have been very fortunate and have gone from strength to strengt
 requiring more surgery, just regular checkups with my paediatrician and
now an adult cardiologist.
                                                                       d to
It is now 2011 and I have celebrated my 21st and become engage
Noel. I have   completed year 12, certificate II Community Services and
certificate II Floristry. I have also worked casually in a supermarket.
played junior tennis for a local club until I turned   16. When I was 16, I did
my debut in Year 10.
With God’s blessing I hope to one day marry and have a family. My
 emotions (and my family’s) have gone from one of devastation to
 as I grew from a very sick baby to an adult   full of healthy energy.

I now wear my scar with pride and feel honoured to share just a small
                                                                       end of
part of my life giving other families hope, that there is light at the
the tunnel.

  Mark Doherty
  Mark was born on the 3rd
  August 1990 weighing 9lb 2oz
  and within a day of his birth
  was diagnosed with a severe
  heart problem.
   After being transferred to
   the Royal Children’s Hospital
   he had some tests and
   it was found that he had
    Transposition of the Great
    Arteries, a large VSD and a
    narrowing of the artery to his
    lungs. He immediately had
     a Balloon Septostomy. A
     further cardiac catheter found
     another smaller VSD. At four
     weeks of age he had “Switch”
     surgery (done by Roger Mee)
     and had the holes patched.
      Nearly everything that we
      were warned could go wrong
      did go wrong after his surgery
      and so we had a few days that
                                                                                his surgery and has never looked back.
      were quite numbing and emotional. Mark was home eight days after
                                                                                   (though he has had braces for his teeth, surgery
      He has thrived and grown up to be a happy, healthy and active person
                                                                            ed’  Geelong supporter, enjoys cricket and works in the
      for appendicitis and torn tendons in his shoulder). He is a ‘one-ey
                                                                                      three week safari, which he is doing at the end of
      hospita lity industry. The next major event for Mark is a trip to Africa for a
     September this year.
                                                                        Angel Lucas. Lucas was born in December 2009 and was
     Heart Kid Mark is pictured here in a very special photo with Heart
     with his family and friends for only a few weeks. Mark and Lucas’s parents share a very special bond. Mark spent a very
                                                                           g Cats hat and scarf.
     special afternoon with Lucas, cuddling him after giving him a Geelon

                            ..... our 21 Year Milestone
        Patrick Hurst
       My name is Patrick and in my life
                                            I have had quite a history when it
                                                                                comes to hospital.
        As an unborn baby the Doctor told
                                               my mother that my heart was in atria
       Stenosis and that I would require                                              l fibrillation and I had Congenital
                                            an Aortic valvotomy operation. But                                               Aortic Valve
       of surviving. So two days after I was                                      even if had the operation I only had
                                               born I had the operation, and as                                             a 30% chance
                                                                                  fate would have it, I survived.
       It wasn’t until the age of 7 that I nee
                                               ded another operation because my
                                  procedure to repair my aortic valv                 aortic valve was leaking blood so
                                                                      e and insert a valved conduit into                    I had a Ross
                                                                                                             my pulmonary valve.
                                                                               At the age of 15 I had my mitral valv
                                                                                                                        e replaced
                                                                               with a mechanical valve. When I wok
                                                                                                                         e up from
                                                                               the operation I thought there was
                                                                                                                      a clock nearby
                                                                              because I heard ticking but I real
                                                                                                                   ized an hour later
                                                                              that it was the mechanical valve insid
                                                                                                                         e of me.
                                                                             Unfortunately for me it didn’t end
                                                                                                                     there. Shortly after
                                                                             the operation I developed a gold
                                                                                                                   en staph infection
                                                                            in my chest and I nearly died from
                                                                                                                    it. So I went back
                                                                            to hospital and was able to have
                                                                                                                  the infection treated
                                                                             And lastly and most embarrassin
                                                                                                                gly when I was 18
                                                                             I got an infected pilonidal sinus on
                                                                                                                    my lower back
                                                                            having to have an operation to clea
                                                                                                                    n out the infected
                                                                            area then undergoing many wee
                                                                                                               ks of treatment.
                                                                           After everything I’ve been through
                                                                                                                  , since then I’ve
                                                                           finished high school, completed
                                                                                                               IT courses at Tafe
                                                                           and am currently doing a diploma
                                                                                                                 in interactive digital
                                                                           No matter what I had to face, no
                                                                                                            matter what I had
                                                                           to endure, no matter what the odd
                                                                                                             s, I never gave up
                                                                           hope and I never will.

 Vanessa Lamberg
 I was born on the 29th July 1990. Mum tells me I was unwell for the
 two years and was a regular at the G.P.
It wasn’t until around my 2nd birthday I was diagnosed with AVSD
Mitral Valve Incompetence. Shortly after I had my first surgery. The
in my heart had been patched and the valve was repaired. I could
keep up with others my own age and participate in swimming and
dancing. This valve repair lasted 7 years and I was then back to have
another repair of the mitral valve.
Not long after my second operation I contracted bacterial endoca
I was extremely unwell and this left scaring on my valve which had
be repaired yet again.
After the third repair of the valve I was able to get back to dancing
regularly and even took up basketball twice a week.
By the time I turned 19 my valve was leaking again moderately and
was advised to have another operation, this involved an attempt to
repair the valve again but the leakage was still quite moderate so
was decided to replace it with a mechanical valve.
I now have to check my blood regularly as I am on warfarin.
My heart condition has not hindered me in any way. I completed a
hairdressing apprenticeship last year, play basketball, dance, go out
with my friends and am traveling to Thailand next month.
Thanks to A/Prof Menahem, Royal Children’s Hospital, Monash
Hospital and HeartKids for all the support and care they have
                             HeartKids Australia News

          Delegates at the
      HKA Conference 2011

     National Conference                                                  Speakers included:
  The fifth national conference was recently held in Sydney.              Assoc Prof David Winlaw - Genes and Environment –
  This saw record numbers of delegates from all States attend             investigating the causes of CHD
  a variety of meetings and presentations spanning a 3 day
                                                                          Dr Nadia Badawi - Developmental Outcomes Among Infants
                                                                          Who Have Undergone Major Surgery
  On Thursday 25 August the Family Support Coordinators
                                                                          Dr Nadine Kasparian - Social and emotional aspects of CHD
  joined together for a full day of facilitated discussions.
                                                                          diagnosis – thinking about the experiences of children and
  The Friday of the conference was broken up in to a series of           their families
  meetings. During the morning the national board met with
                                                                         Assoc Prof Brigid Jordon - Happy and unhappy families
  various members of the State Boards whilst all the other
                                                                         in the midst of sore hearts: the impact of neonatal cardiac
  delegates gathered to discuss the growing issue of how to
                                                                         surgery on infants and their families
  effectively manage and support teens and adults living with
  CHD. Conference Guest speaker, Amy Verstappen who is the               Dr Suzanne Long - Physical development following early
 CEO and President of the American Adult Congenital Heart                cardiac surgery
 Association, gave an insight into how this is managed in the            Ms Karen Leclair - The School Experience – what you need to
 US, whilst a number of Australian ACHDers (Adults with CHD)             know as a parent of a heart kid
 gave their perspective on the needs and options.                        Dr Richard Hawker - Making the transition from paediatric
 The outcome of the meeting was the tabling of a number of               care to an adult care facility
 recommendations which were presented to the HKA board                  Dr David Tanous - Clinical management and challenges of
 for consideration.                                                     ACHD (pregnancy, insurance, loss to follow-up, advice on
 During the afternoon all delegates joined for a national               which specific conditions require specialized adult CHD care)
 update and a variety of presentations from additional guest            Parents wanting a CD of the presentations are requested to
 speakers.                                                              contact Lisa White, Administration Manager HKA:
                                                               or phone (02) 9875 4090

                                                                        Passing on the Baton
                                                                         After serving four years as the Foundation CEO of HeartKids
                                                                         Australia I have decided the time is right to hand over the
                                                                         baton to a new CEO to take the organisation through its next
                                        Acting CEO of HKA Ala           phase of development and for me to explore new options.
                                       Bowden with Terry Ho             The past four years have provided me with a great sense of
     Family Support Coordinators        State Manager/CEO HK            pride, enjoyment and challenge and it has been an honour
      from all states at the HKA                                        to have taken the national entity from a mere concept to the
                                                                        point it enjoys today.
                                    Left: Tracy Stanley, HKV Support    I believe I leave the organisation with a strong foundation
                                   Manager, with ACHA President/       and a clear vision for the future, but feel a new CEO will be
                                   CEO Amy Verstappen and Lara         best placed to take ownership of the new Strategic Plan and
                                   Syddall CEO @Heart NZ, and
                                                                       drive the organisation to achieve the seemingly limitless
                                   Sherrie McDonald, FSC from
                                   HeartKids Victoria
                                   [ACHA is the Adult Congenital       I wish HeartKids well for a prosperous and exciting future and
                                   Heart Association, USA]             will look back on my time with the organisation with many
                                                                       fond memories.
Parent Education Seminar                                               Neil McWhannell
Sunday saw the inaugural CHD Information Seminar. This was             Chief Executive Officer
held at the National Museum and proved to be extremely                 HeartKids Australia
popular as it was fully subscribed. During the day parents and         September 2011
interested people received a wide variety of presentations
from an expert panel of speakers. The day proved to be such            HeartKids Victoria says farewell and sends best wishes to
a success that the organisation is already planning for this to         Neil as he moves on to new endeavours in the future.
become an annual event.

                          Heart Angels                                                             Heart Angel
                             Matilda Farley                                                       Remembrance
                     Born sleeping - 27th July 2011                                     We remember these Heart Angels whose birth
                                                                                         date or anniversary is in the Spring months.
                            Thomas Jones
                  13th June 2008 - 19th August 201
                                                  1                                                      Birth Dates
                                                                                               Eliza Davis 3rd September 2010
                                                                                          Thomas Goodfellow 24th September 1999
                                                                                                 Bryce Ibbs 7th October 1989
                                                                                               Jesse Cotter 12th October 1990
                                                                                             Matthew Moran 20th October 2004
                                                                                               Alyssa Alsop 7th November 2001
                                                                                              Owen Crew 15th November 2005
                         “Little Angels”                                                     Mia Campbell 16th November 2009
       When God calls little children to dwe                                               Georgia Morrison 16th November 1998
                                                    ll with Him above
      We mortals sometime question the
                                                  wisdom of His love.                        Frank Desensi 20th November 2004
    For no heartache compares with the
                                                death of one small child
...Who does so much to make our wor
                                             ld, seem wonderful and mild.
          Perhaps God tires of calling the age
                                                       d to his fold.                               Anniversary Dates
           So He picks a rosebud before it can
                                                        grow old.
   God knows how much we need them                                                              Eliza Davis 13th September 2010
                                              , and so He takes but few
        To make the land of Heaven more bea                                                     Dylan Grilli 17th September 1994
                                                       utiful to view.
        Believing this is difficult, still someho                                               Jaime Ekberg 3rd October 2007
                                                    w we must try.
   The saddest word mankind knows
                                            will always be “Goodbye”                             Finn Adair 11th October 2006
      So when a little child departs, we who
                                                      are left behind,
                 Must realize God loves children                                              James Kelleher 22nd October 2008
                     “Angels are hard to find”.                                              Kiera Ziegenhardt 29th October 2010
                                                                                               Alyssa Alsop 11th November 2005
                                                                                           Thomas Goodfellow 29th November 2010

       Remembering Jackson
          We wrote your name in the sand,
           but the waves washed it away.
               We wrote it in the sky,                                                     Thinking of You
             but the wind blew it away.                                       Our thoughts and prayers are with
           So we wrote it in our HEARTS                                                                           the families and
                                                                               friends of all Heart Angels in their
            and that’s where it will stay.                                                                          time of loss.
                           Author Unknown

      Jackson Walsh                                                         Grief and Bereavement Support Services
      Happy Birthday
      Our Heart Angel                                                       A variety of support services is available in the
                                                                            community for bereaved families.
 17.08.2009 - 28.12.2009
                                                                            A list of organisations and websites can be found on
   Love Mummy, Daddy                                                        our HeartKids website at
     and big sis Riley
                                                                            Click on the tab ‘Links’, then scroll down through the
                                                                            links to the various sites.

                                         Heartfelt thanks....
King and Queen of Hearts Gala Dinner 2011

Above: the inspiration for the Gala Dinner,                                                          From top left: Terry Hopkins
our 2011 King and Queen of Hearts                                                                    congratulating Dr Bryn Jones,
                                                                                                     guest speakers Dr Jones and Geoff
                                                                                                     Kellam, and host John Blackman
HeartKids Victoria is very happy to announce our
inaugural King and Queen of Hearts Gala Dinner held
on Thursday 28 July 2011 at RACV Club in the city
was a huge success. Hosted by John Blackman (who
apparently has his own HeartKid in Dicky Knee!), and
with guest speakers including our CEO, Terry Hopkins, the
winner of our inaugural HeartKids Victoria Bursary Dr Bryn
Jones, and a HeartKids dad, Geoff Kellam, the evening was an
emotional and celebratory occasion enjoyed by all.
Entertainment was provided by the Brian Fitzgerald Band and
the highlight of the evening was entertainer and speed painter
extraordinaire, Brad Blaze! Brad whipped the audience
into a state of awe as he splashed paint around and finished
minutes later with amazing paintings of Bono from U2, Marilyn
Monroe and Elvis Presley. As if that wasn't enough, he had
guests in hysterics moments later as they were invited up to do
their best impersonations of Elvis and Marilyn. The food was
divine, the attendees great company, and the ambience of the
evening fun and elegant.
We had an outstanding array of raffle prizes and silent auction
items, plus a live auction run by the efficient Helping Hands
Group with items auctioned by the very professional Tom
Alexiadis of Nelson Alexander.
                                                                  Some of the raffle prizes (above left) and auction items (right)
With these fundraisers on the night, plus ticket purchases        Below: speed painter Brad Blaze in action
and sponsorships by Mercedes-Benz Toorak, SCCS, Arrow
Training, Real Estate Career Developers and Nelson Alexander,
HeartKids Victoria is proud to announce that we raised over
We would like to say a particular thank you to Mercedes-Benz
Toorak for their contribution. During May, in celebration of 40
years of heartfelt business, Mercedes-Benz Toorak donated
$300 to HeartKids Victoria from every vehicle sold.
Special thanks must go to our Events Sub-Committee, staff
and volunteers, and all our supporters including Rochford
Wines, Tempur Mattresses and Pillows, JMS Diamonds, TAG
Heuer, AH Beard, World Series Paintball, Sealy, Baby's Got
Style, Forty Winks Prahran, South Wharf & Fitzroy, RACV Club,
Contours Fitness, Aromababy, Slick Design, Blush Photography
and Aesop.

                                   ....for your support!
   Que en of Hea rts Hig h Tea
  HeartKids Victoria was very proud to
  host the National Launch of the Cuppa
  for HeartKids campaign with our Queen
  of Hearts High Tea.
  Held on Thursday 25 August 2011 in the
  residence of Grand Hyatt Melbourne,
  the event had the feel of being in a
  private, sophisticated mansion with an
  intimate crowd.
  Hosted       by   Australia’s   Leading
  Nutritionist, Lola Berry and featuring
  some of Melbourne’s top chefs, Greg
  Malouf (Mo Mo), Pierrick Boyer (Le Petit
 Gateau), Neredah and Andrew Blake
 (Blake’s Feast), Sacha Meier (ba ba lu),
 and Jason Camillo (Collins Kitchen,
 Grand Hyatt Melbourne), the High Tea
 showcased some fabulous ideas for
 guests to take away and create their
 own “Cuppa” event at home and with
 Several lucky guests won chef-hosted
 high teas, lunches and masterclasses at
 our chefs own venues, and others were
 the highest bidders in our gorgeous
 selection of silent auctions.
 All guests took home a chocablock gift
bag full of Dilmah Tea, Jamaica Blue
Coffee, Lindt Chocolates, gourmet
cooking magazines and other delicious
treats. And our very own HeartKids
and HeartKid siblings looked delightful
in our newly released and launched
HeartKids Pettiskirt and Top (jump on to
our website to see how to order).
And if this wasn’t enough to pack into
two hours of fun, we also launched an
amazing offer from JMS Diamonds
(see our website for details - www.
With speeches from Dr Michael Cheung,
Acting Director of Cardiology at the RCH,
HKV State Manager/CEO Terry Hopkins,
and our own HKV mum, Nikki Burgess, the
guests and media were presented with a
real insight into the life of HeartKids.
Along with a broad array of media to take
the message to the public, we had huge
support from 2011 winners of The Block,
Polly and Waz, top five 2011 Masterchef
contestant, Dani Venn, and 2011 My
Kitchen Rules runner up Lee Chan.

Run Melbourne
                               Run Melbourne, presented by The Age was held on Sunday 17
                               July 2011. Over 20,000 runners and walkers took part in the
                               5km, 10km or half-marathon challenge on a lovely Melbourne
                               Winter morning. The event has raised $1,279,135 for a variety of
                                We would like to thank everyone who joined the HeartKids
                                team particularly our ambassador Glenn Archer who ran the half
                                marathon and was the top individual fundraiser for the event.
                                Glenn’s participation generated a lot of media interest with
                                several articles in The Age and the Run Melbourne website.
                                Our team had over 40 team members and raised
                                over $40,000. We’d also like to thank Cotton On
                                 Foundation for providing HeartKids singlets for our
                                 team members.
                                   HeartKids and Glenn Archer donated $25,000
                                   from the proceeds of Glenn’s fundraising
                                   towards Finnan’s Gift for the purchase of an
                                    echocardiography scanner for the Cardiology
                                    Department at the Royal Children’s Hospital.
                                    Finnan’s Gift was created by Oliver Warner & Alisa
                                    Camplin-Warner to honour their son Finnan.

 Windy Hill Footy Luncheon                                                                    football matches between Essendo
                                                           rtKids day incorporating a day of
 On July 31st Esse   ndon Superrules ran a special Hea                      groups. The games wer    e scheduled to be played at the
                                      over 47, over 40 and over 35 age                                      ured speeches from the
 and Diamond Valley teams in the                                        the over 40’s game. The lunch feat
                                      an’s lunch being held during                                            ment from a magician
 Windy Hill ground with a sportsm                                         CEO, Terry Hopkins, and entertain
 President of the Essendon Sup     errules, Howard Mitchell, and our                                      ndees and over $3000 was
                                                                     great day was had by all of the atte
 and a panel featuring Bro   die Holland and Tony Sheahan. A
 raised for HeartKids.
                                                                              put the day
                                         Mitchell for his tireless efforts to
 A very special thankyou to Howard                             rs including Gary Pearce
                                       donors and voluntee
  together as well as key sponsors,                            lds Tullamarine, Bendigo
  at Hyundai, Ken And    erson at Fisher & Paykel, McDona                     Holland, Tony
                                       Council, Andrew Catterall, Brodie
  Bank, Glenroy Sports, Hume City                                           hell and Shereen
                                         t players, Don Gross, Kath Mitc
  Sheahan, Barry Capuano – EFL pas
                                        rs the HeartKids logo on their foot
   Essendon Superrules proudly wea
                                                                                 rts Gala
                                       ted our recent King & Queen of Hea
   Essendon Superrules also suppor
   Dinner filling three tables.

                                   ....Special Efforts!
Ted Kitto - Ambassador Extraordinaire
                                       Since October 2010 when Ted Kitto won the annual
                                       Victorian Senior of the Year award he has continued
                                       to be an active Ambassador for HeartKids Victoria.
                                       Ted is pictured left with a relative, three year old
                                       HK Chelsea Singleton.
                                       Right: Here’s Ted presenting a cheque to Terry
                                      Hopkins, CEO of HeartKids Victoria. The cheque
                                      represented the proceeds of the cubby house raffle
                                      and trivia night conducted by the Kiwanis Clubs in
                                      the Kiwanis Division 7.

   Th e Bl oc k
    The Block contestants Polly & Waz
                                         threw their support behind HeartKi
   to help raise awareness about CHD                                           ds
                                         . They have been personally touc
   with a friend’s baby dying from a                                         hed
                                      severe heart condition.
   It was an amazing opportunity for
                                       HeartKids to raise much-need
  awareness on national TV. We had
                                       volunteers wearing HeartKids polo
  hats and carrying HeartKids balloon                                         s,
                                         s rattling HeartKids money tins
  outside Polly & Waz’s house at bot
                                       h Open for Inspections and were
  featured on Channel Nine news the
                                          night of the first Open for Inspecti
 Polly & Waz wore HeartKids bran
                                    ded clothing in several episodes,
 they were filmed visiting our card
                                     iac ward at the Royal Children’s
 Hospital, played for HeartKids on
                                      Millionaire Hotseat, appeared in
 several newspapers wearing thei
                                   r HeartKids branded clothing and
 photographed sharing a cuppa with                                        were
                                         two of our heart children to promot
 our Queen of Hearts High Tea and                                                e
                                       Cuppa for HeartKids campaign.
 The auction of the four properties
                                      was a night of highs and lows with
three of the four properties passing
                                        in. Russell Cambridge, auctioneer
from Biggin & Scott Richmond ann
                                      ounced that his company would
donating their commission to Hea                                          be
                                     rtKids. Polly and Waz’s property sold
for $855,000 – giving Polly & Waz
                                    a profit of $15,000 but being the
contestants to sell their property                                       only
                                   they were announced as the winn
winning $100,000 prizemoney.                                             ers –
Congratulations to Polly and Waz
                                    for winning The Block and a huge
                                                                          THANK YOU for supporting Hea

                  Thank you for your recent gifts...
Arrow Training                                  BJ & HM Green                                 Northern Lights
Artistic Signs                                  Jodie Grocock                                 Northern Motor Group
B Well Beauty & Massage                         Grote Reber Foundation                        Olympic Park Sports Medicine
Barr Family Foundation                          Noal Guest                                    Corey Prendergast
Bascombe Family                                 Hairhouse Warehouse                           Rap Group
Bloh                                            TC Hay                                        Retail Food Group
Borg Manufacturing                              Heaths Rd Investment                          Ritchies
D & C Bourke                                    Karma Currency                                Jade Rose
Bredgar Medical                                 Kelgrove Holdings P/L                         Rotary Club of Tullamarine
J Cendo                                         Keys Moorabbin                                Schiavello Furniture
Julie-ann Compston                              Kiwanis Club of Shepparton                    Schiavello Group
Country Womens Association - Brighton           Kiwanis Club of Sunbury                       Sohedal P/L
Country Womens Association - Umina              Denise Klose                                  Southern Cross Computer Systems
                                                L & P Lewi                                    Charles Stewart
Lorraine Cumming                                Little Tinkers                                Fr. Donald Thomas
Conrad D’Cunha                                  Bill McIntyre                                 Dr Napier M Thomson
Dandenong Nissan                                mecu                                          Urban Edge Homes
Amy D’Couto                                     Mercedes-Benz Toorak                          Victorian Teachers Credit Union
Del-Re National                                 Methven Real Estate                           Warbo & Dina
D & J Dippie                                    Mirabella International                       Watergardens Haircare
Deborah Dowling                                 Jason Moloney & Hannah Uerhueft               Jeff Wignall Group
Matilda Farley Memorial Donations               Xavier & Anne Maree Mugavin                   Winter & Taylor
BM Fisher                                       Fevzi Mustafa                                 M & S Zaccaria
Suzanne Gallpen                                 J & L Nastasi
Melanie Gillies                                 Xaut Nicole

                                                                 Thanks HeartKids!
                                                                 Here’s Sophie Penney enjoying her sausage roll at a HeartKids

       Circus OZ                                                 Thursday Morning Tea at the Royal Children’s Hospital.

                                  arity, provided
       Variety, the children’s ch
       tickets for some of   our families to
       an exclusive Circus Oz
                                 11, under the
       on Friday 24th June 20
                                  ung Marr,
        heated big top at Birrar
                                nderful time
        Our families had a wo
                                 fying stunts,
        enjoying the death-de
                                 c performances,
         awe-inspiring acrobati
                                  ular live band.
         comedy and a spectac
         We would like to thank
         Victoria for their on going support.

                 Yes! I’d like to be involved with
                        HeartKids Victoria...
HeartKids Victoria is a registered              p I would like to make a donation of $.........................
charity and our services rely                               (thank you, an official receipt will be sent)
heavily on the wider community
                                                	           p Cheque                 p Money Order - payable to HeartKids Victoria
to be volunteers, sponsors and
donors.                                         	           p Visa                   p Mastercard

Tax deductible donations can be                             Credit Card No:             __ __ __ __ : __ __ __ __ : __ __ __ __ : __ __ __ __
made securely on our website or                                  Expiry Date: __ __ : __ __ Signature: ...........................................................
forwarded directly to HeartKids
Victoria.                                                   CVC No: __ __ __ Cardholder Name: ..........................................................
Please send me more information
                                                            Date: ......................... Signed: ........................................................................
about HeartKids Victoria and in
particular about:
                                                p I would like to make ongoing donations to HeartKids
	       p Becoming a Member                                 Please automatically debit my credit card: Amount $.................................
          (Membership is free)
                                                            p Monthly                  p Quarterly               p Yearly
	       p Becoming a Volunteer                              I hereby authorise HeartKids to deduct these funds from the credit
        p		 articipating in                                 card detailed on this form until further notice.
          fundraising & awareness
                                                Mr/Mrs/Ms: (First Name) .............................. (Last name)........................................................
	       p Business sponsorship
	       p Making a regular gift                 Street Address: .................................................................................................
          through my bank
	       p Leaving a gift in my will             Suburb/Town: ................................................ State: .......... P/Code: .............

Please complete this form & post to:            Phone: ................................ Email: ..................................................................
       HeartKids Victoria
       PO Box 803, Parkville 3052               Heart Child’s Name (if applicable): ........... ............. Relationship to child: ..............
      Donations of $2 and over                  Please be assured your details remain strictly confidential. If you do not wish to receive
        are tax deductible                      any further information fron HeartKids Vic, please tick this box p

                                                                                     Written your Child’s Story?
                                                                              Many members find writing of their experiences with their heart
                                                                              child to be very therapeutic. If you are ready to share your story,
                                                                              we invite you to submit it for publishing in the newsletter and /or
                                                                              the website.
                                                                                               Word limit: up to 1500 words with several photos
                                                                                                for the newsletter; no word limit for the website.
                                                                                                      When emailing photos to us for printing, please
                                                                                                      send a high resolution photo, at its original size.
                                                                                                                Send your contribution to either:
      Find us on Facebook                                                                                or
Now it’s easy to keep up with the latest news and media
                                                                                                                   HeartKids Victoria Newsletter
coverage, share your thoughts and ask questions - just find us
                                                                                                                           PO Box 803
on Facebook!
                                                                                                                        Parkville VIC 3052
Log on and let us know what you think!

                                              
                       
 
                  Diary Daters artKids
                           fo He
                  ber - Cuppa
  August/Septem                                  p 
                             ber - Family Cam
 Fri 23 to Sun 25 Septem              ai n Day
                   ober - Box Hill Tr
   Saturday 22 Oct                                    
 nday 6 November - M        yuna Farm Day
                                anian Special         
             November - Tasm
 Sunday 6               Children’s Party, Hoba
                                                  rt           HeartKids Victoria
                      ber - FunFlight 20
                                            11                CONTACT US                                             ARN: A0021470B
  Sunday 13 Novem                    l City to Sea
                    mber - Inaugura                            PO Box 803                                         ABN: 16 336 986 918
    Sunday 13 Nove                      as Party       
  Saturday 26 November - Christm                              Parkville Victoria 3052
                         ber - Magic Show                     P: (03) 9513 9030                             HeartKids is an Auxiliary of
         rday 26 Novem
  Satu            November - Mov
                                      e to new RCH             F: (03) 9345 6765                          The Royal Children’s Hospital,
     Wednesday 30                             as Party                                                           Melbourne, Australia
                           - Hobart Christm                    E:
   Date to be confirmed                  tm as Party
                     r - Geelong Chris                         Facebook: HeartKids Victoria (including Tasmania)
     Sat. 3 Decembe                                     
   20-23 January 2012 - Teen      Camp in Sydney
                                                               VISIT US
                                           ke Show
                       - Tassie Car & Bi                
    5 February 2012                           eness           Suite 310 / 55 Flemington Road
                       ry - HeartKids Awar
      Month of Februa                                          North Melbourne 3051
                                           k inside or 
    For more about these events chec                
      go to www.heartk                          
                                      
                 
                                                         Contact Details
                                                                                                               EBSTEIN’S ANOMALY
    MELBOURNE METRO                     Ballarat                           Wonthaggi                           Kathy Sims (03) 5831 1110
    BRANCHES                            Naomi Keath (03) 5332 3679         Cath Methven              
                                        0408 559 535                       0429 325 643
    Bayside                                                                                                      OVER 18’s
    HeartKids Messagebank                                                                                        Erin Cervelli (03) 9513 9030
    (03) 9513 9030                      Bendigo                                                                  KAWASAKI DISEASE       Kym Fitzgerald (03) 5442 8792       TASMANIA                             Shirley Mates (03) 9894 1257
    East Bentleigh                                                          Burnie
    Maggie Stavrou (03)       9563 7133 Ech  uca/Moama                      Amanda Riley 0448     330 611        Website: www.kdfoundation.
    maggiestavr     Tracey Hard                         amanda.rile
                                        0438 962 056                                               6433 1274     KABUKI SYNDROME
    Dandenong                                                                Gail McFarlane (03)
                     ) Hussain                          789                      Stacey McKiernan
    Lucy (Fatima                                                             0488 033
    0430     738 820                    Geelong                                (03) 5275 1542
                 ton Peninsula           Libby Gibson (03) 5250 2439                                    
    Morning                                                                  Hobart
     Irene Day (03) 5979 4918
                                         0411 057 905
                                                                             Paul Hyland (03) 6247 8435           Website:
                                                                                     HYPOPLASTIC LEFT HEART
     0413 299 209                                                             0418 561 504
     ieday@optus        Horsham                              paul.hyland           SYNDROME
                                         Gaynor Baker (03) 5384 2280                                               & SIMILAR CONDITIONS
      Pakenham                                                                Launceston
     Joanne Arrowsmith                                                        Kylie Smith (03) 6393 6240
      (03) 5967 7083                      Latrobe Valle y                     0448 983 587                         Leanne Amarant (Victoria)
                                               hie Werner 0427 955 453                           (03) 5358 2945 Leanneamarant@             Sop
      Point Cook                                                                                                   Csaba Ovari (Tasmania)
      Audrey Cater (03) 9394 7965         Port land
                                          Kerry Sluggett (03) 5523  2503      INTERSTATE                            (03) 6229 8169
       0420 500 905                                                            Contact details at:                    0418 312 320
                                                                               www              LONG QT SYNDROME (LQTS)
       Tullamarine                                                                                                  Sherrie McDonald 0417 308 409
       Lynette McCoullough                 Goulburn Valley
                                           Cheryl Alexander                    SPECIAL INTEREST GROUPS               sherrie.mcdonald@heartkids.
       (03) 9333 1586                                                                                       (03) 5825
                                                     4005                      BEREAVED FAMILIES EMAIL
                                           chezalex70@bigp                                       or
        Amanda Reed                        South Gippsland                     http://www.hearts-o
                                            Kerrie Disney (03) 5182 5531       support/bereavment/intro.htm          CARDIOMYOPATHY ASSN of                                                                                    AUST.
        Janita Felici (03) 8812 2231        0409 950 608                        HEART TRANSPLANTS
                                                                    en (03) 5282 4486       Website:                                                 Belinda Hold
                                            Stawell                                                                   MUSLIM FAMILIES
                                                                                                                      Lucy (Fatima) Hussain
                                            Leanne Amarant                      Mandy Tichelaar (03) 9728-6984
         REGIONAL BRANCHES VIC              (03) 5358 2945 or  0419 864 412                                           0430 738 820
         Albu  ry/Wodonga                   leannea                                               MULTIPLE BIRTHS
                                                                                Audrey Cater (03) 9394 7965
          April Schubert (02) 6056 6448      Wangaratta                                                               April Schubert (02) 6056 6448
                                                                                0420 500 905
          0407 551 967                       Karyn Howard 0412 988 285                                                0407 551 967
          Caroline Foard 0438 928 821

To top