CHERUBS Events _ Get-Togethers by jianghongl


									      CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

                     CHERUBS Events & Get-Togethers
 Date                      Event                                                  Location                     For More Information:
 March, 2009               Texas Bake Sale                                        Corpus Cristi, TX            Melissa - 361-288-4698
 March, 2009               CHERUBS Ebay Auctions                                  Around the world             Dawn - 919-610-0129
 May, 2009                 Michigan Member Bowl-a-Thon                            Flint, MI                    Barb - 810-845-8480
 June, 2009                2009 UK Conference                                     Great Britain                Brenda - 0800 731 6991
 June, 2009                Pennsylvania Get-Together                              Elizabeth, PA                Kate - 412-414-7073
 July, 2009                2009 International Member Conference                   Texas                        Dawn - 919-610-0129
 August, 2009              Ohio Get-Together                                      Columbus, OH                 Tara - 614-275-0858
 September, 2009           Jeremiah’s Car Show                                    Columbus, OH                 Sarah - 419-512-3446
 October, 2009             2008 Australia Conference                              Australia                    Danielle - 03 5135 6999
 October, 2009             New England Get-Together                               Salem, MA                    Corin - 401-524-9182
 October, 2009             Gabe’s Bowl-a-Thon                                     Salem, MA                    Corin - 401-524-9182
 October 29, 2009          CHERUBS Masquerade Angel Ball                          Durham, NC                   Dawn - 919-610-0129
 December 13, 2009         National Children’s Memorial Day                       Around the world             Dawn - 919-610-0129
 January 16, 2010          Shannon Crawford CDH Spaghetti Dinner                  Elizabeth, PA                Kate - 412-414-7073
 July, 2010                2010 International Member Conference                   San Francisco, CA            Dawn - 919-610-0129

                         Inside this issue:
               Letter From Dawn     2
                                                   New Member Welcome        11
     “Stories of Cherubs” Vol. II   2
                                                    Newsletter Dedication    12
     CHERUBS 2009 Calendar          2
                                           Thanks to Volunteers & Spon-      12
    CDH Awareness Trademark         3
                                            “Cooking With Cherubs” Vol.      13
   CDH Information & Statistics     4
                                                             Gabe’s Gifts    13
         Goodsearch & Goodshop      5
                                         State & International Representa-   14
   Current CDH Research Studies     5
    2008 International Conference   6        Volunteering at CHERUBS         14
                 2008 Angel Ball    7            Olivia Raine Foundation     15
           2008 Golf Tournament     7      Jack Ryan Gillham Foundation      15
                 2008 Ohio Picnic   8                   Stories of Cherubs   16                       CHERUBS
       2008 Jeremiah’s Car Show     8                           ACDHO        24
                                                                                        The Association of Congenital Diaphragmatic Hernia
        2008 Faith’s Blood Drive    9                           Disclaimer   24                 Research, Awareness and Support
       2008 Gabe’s Bowl-a-Thon      9             New Fundraising Items      25                       3650 Rogers Rd, #290
    2008 New England Zoo Trip       9                 On-Call Volunteers     25                       Wake Forest, NC 27587

  2008 Donations to CHERUBS         10                  Photos of Cherubs    26                         919.610.0129 Phone
                                                                                                         815.425.9155 Fax
       CHERUBS - The Association of Congenital                                     ~
    Diaphragmatic Hernia Research, Awareness and

The Silver Lining Newsletter                                                                      V o l um e XI II, Is s u e 2 , 2 0 0 8, P a ge 1
      CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

 Letter From Dawn                             filed a Petition to Cancel with the
                                              United States Patent and Trademark
                                              Office against the trademarking of the
 Dear Members,                                phrase “Congenital Diaphragmatic
                                              Hernia Awareness”. We felt this was
    It has been a very exciting year          a necessary step to protect the rights
 here at CHERUBS!                             of all CDH families and organizations.
      We had many events happening            More information is in this issue.
 around the world, including our 2008             This year CHERUBS became one
 International Member Conference.             of the founding members of the Alli-
 Several articles and photographs are         ance of Congenital Diaphragmatic
 in this issue.                               Hernia Organizations, a group of
                                                                                            We are solely volunteer-run, re-
    We moved in October. Please               dedicated CDH organizations and
                                                                                            ceive no grant funding and exist
 note our new mailing address and             researchers that we are extremely
                                                                                            only on donations. We realize the
 phone number below.                          proud to belong to.
                                                                                            economy has been hard on all of
     CHERUBS began our Congenital                 We have many new fundraising              us this year but if you can donate,
 Diaphragmatic Hernia Research                and awareness products available!             please help us to continue to help
 Site, which we hope will start tallying      “Stories of Cherubs” Vol. II is now           CDH families.
 research results in the Spring of            available, as well as “Cooking With
                                                                                                We also have another name
 2009. We are having a hard time              Cherubs” Vol. III. A huge thank you
                                                                                            change - my own. I was married
 funding the $500 per month of fund-          to the many, many families who do-
                                                                                            in October and I have a new last
 ing that it will require to rent and run     nated stories, photos and recipes for
                                                                                            name. My wonderful husband
 the needed software.                         these books. CHERUBS 2009 Cal-
                                                                                            Craig and 13-yr-old twin stepsons,
                                              endar is also available and includes
     On December 4th, CHERUBS                                                               Braden and Garret are all 3 won-
                                              over 500 photographs of cherubs.
                                                                                            derful supporters of CHERUBS.
                                              Members have submitted drawings
                                                                                            From our family to yours, and
                                              for our 2008 holiday cards and orna-
                                                                                            from our big international CHER-
                                              ments and for our CDH Skateboards.
                                                                                            UBS family, we wish you very
                                              All of these items and 1000’s more
                                                                                            Happy Holidays!
                                              are available on-line.
                                                                                            Dawn M. (Torrence) Williamson
                                                 Please remember CHERUBS as
                                                                                            Founder, President & CDH Mom
                                              you make end-of-year donations.

                                                 “Stories of Cherubs” Vol. II
                                            More stories of cherubs. Volume I also available.

                                                          Contact Info

                                                   3650 Rogers Rd, #290
                                                   Wake Forest, NC 27587
                                                      919.610.0129 Phone
 CHERUBS 2009 Calendar                                 815.425.9155 Fax
 Includes over 500 cherubs.

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       CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

  Congenital Diaphragmatic Hernia Awareness Trademark
                                  On April 1, 2008, Elizabeth Doyle-Propst, CEO of Breath of Hope, Inc, filed a trademark request
                            with the United States Patent and Trademark Office to own the rights to the phrase “Congenital Dia-
                            phragmatic Hernia Awareness” and a logo of a turquoise ribbon. This request was initially denied. It
                            was resubmitted without the logo and went onto the Supplemental registry on September 17, 2008.
                            Preceding and following this registration, Breath of Hope, Inc. filed complaints and sent threatening
                            correspondence to other CDH organizations and families who used the term “Congenital Diaphrag-
                            matic Hernia Awareness”.
                                  Immediately, 8 CDH organizations sprang into action and gathered over 4000 signatures on an
                            on-line petition. CHERUBS is proud to be one of the organizations who is standing up for the rights
                            of our CDH families, medical care providers and children.
                                  On December 4, 2008, CHERUBS filed a Petition to Cancel with the United States Patent and
                            Trademark Office against the trademark “Congenital Diaphragmatic Hernia Awareness”.
                                  It is our goal, along with 7 other CDH organizations and 1000s of CDH families, doctors and
                            nurses from around that world, that this trademark be canceled so that all people affected by Congeni-
                            tal Diaphragmatic Hernia be able to raise awareness without the threat of lawsuits. Congenital Dia-
 phragmatic Hernia is a severe, and often deadly, birth defect that affects over 1600 babies each year in the United States alone
 and it would be extremely detrimental for one person or organization to dictate who can raise awareness for this birth defect.
 Because threats and complaints have been filed in the past and recently by Breath of Hope, Inc against organizations and per-
 sons using the term “Congenital Diaphragmatic Hernia Awareness”, we felt that we had no choice but to stand up for CDH
 families and to fight for their rights to raise awareness.
       It is our sincere hope that the United States Patent and Trademark Office will see that it is in society’s best interest to can-
 cel this trademark. We also hope that Breath of Hope, Inc and Elizabeth Doyle-Propst will refrain from any further attempts to
 harm members of the CDH community and will handle this matter in a mature, professional, non-vindictive and compassionate
 manner and put CDH families and their awareness rights first and foremost – as should be the behavior of any non-profit organi-
 zation for families affected by Congenital Diaphragmatic Hernia.

       Because of the legal and ethical issues behind "Congenital Diaphragmatic Hernia Awareness Day" and the fact that procla-
 mations gathered by CDH families for this day were used in the register-
 ing of the "Congenital Diaphragmatic Hernia Awareness" trademark,
 CHERUBS gracefully chooses to decline to support this event. We re-
 spect the rights of our members and all CDH families to celebrate CDH
 Awareness on that day, but in good conscience, we can not support this
 event or the organizations behind it.
       Instead, CHERUBS chooses to support CDH families and awareness
 every day, by everyone. Freely. CHERUBS wishes to support the organi-
 zations and families who work hard, all year round, to stand up for our
 children and make sure that their rights and their memories are respected:

                            CHERUBS Australia
                              CHERUBS UK
                                 Kays Kids
                       Jack Ryan Gillham Foundation
                                Little Lambs
                          Olivia Raine Foundation
                             Rainbow of Hope

The Silver Lining Newsletter                                                                 V o l um e XI II, Is s u e 2 , 2 0 0 8, P a ge 3
        CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

                       Congenital Diaphragmatic Hernia
 History of Congenital Diaphragmatic Hernia

 • Diaphragmatic Hernia was first described in 1575 by Pare' in reporting in 2 autopsies of adults who had acquired diaphragmatic hernias by
 • In 1672, the first description of Congenital Diaphragmatic Hernia was reported by Lazarus Riverius during the autopsy of an adult male.
     Miraculously, this man lived 24 yrs with CDH in the 17th century.
 •   In 1701, Holt reported the first case of CDH in a child.
 •   In 1796, Morgagni discussed various types of diaphragmatic hernia, including the anterior CDH that bears his name.
 •   In 1827, Cooper described the symptoms, pathology and classification of CDH.
 •   1834 Laennec was the first to suggest a laparotomy that could be used to withdraw intestine from the chest cavity.
 •   In 1847, Bowditch presented the first collected series of patients with diaphragmatic hernia in 1847 before the Boston Society for Medical
 •   In 1848, Bochdalek, described CDH that occurs posterolateral. This now bears his name.
 •   In 1888, the first recorded attempt of a laparotomy to reduce the hernia was made by Naumann.
 •   In 1902 the first reported successful operation of an infant born with CDH
 •   In 1946, Robert Gross reported the first successful repair of a CDH in a baby less than 24 hours old.
 •   In 1976, ECMO (Extracorporeal Membrane Oxygenation) was first used successfully in the treatment of persistent pulmonary hypertension.
 •   In 1976, doctors first used lambs to create a CDH, researching for the cause and best treatment of CDH.
 •   In 1989, Michael Harrison led the team at the UCSF in the first succesful open fetal surgery for CDH.
 •   In 1992, "Gentle Ventilation" of CDH first began at the University of Florida, led by David Kays
 •   In 1994, the first NIH sponsored clinical trial for fetal surgery was done at UCSF for the open repair of congenital diaphragmatic hernia
 •   In 1995, The CDH Study Group was formed with medical professionals from the around the world with a vested interest in CDH.
 •   IIn 1995, the first international organization for families and medical care providers of children born with Congenital Diaphragmatic Hernia
     was created. CHERUBS still leads the CDH community in providing support and works with the medical committee to provide information
     and research options.
 •   In 1996, first successful fetoscopic temporary tracheal occlusion for CDH was done at UCSF by Harrison and team.
 •   In 1997, CHERUBS published it's first Congenital Diaphragmatic Hernia Research Survey Results, tallying research data from families.
 •   In 1997, the first on-line information site for CDH was created by CHERUBS.
 •   In 2000, First NIH sponsored randomized controlled trial for fetal surgery was done at UCSF
 •   In 2000, the first international conference for families affected by CDH
     was held in Orlando.
 •   In 2007, the Association of Congenital Diaphragmatic Hernia Organiza-
     tions (ACDHO) was formed.
 •   Also in 2007, the Official Congenital Diaphragmatic Hernia Awareness
     Ribbon was created by families of children born with CDH to help raise
     awareness and research of the birth defect.
 •   In 2007, the first on-line forum specifically for CDH was created
 • In 2008, CHERUBS created the first web site dedicated solely to free
     access of information for research of CDH.
 • Stonewall Jackson suffered from an unrepaired Diaphragmatic Hernia.
     Whether it was Congenital is not known.
 • CDH occurs in 1 of every 2500 to 4000 babies, as reported in 2006 by
     The CDH Study Group. The survival rate is still 50%.
 • The cause of Congenital Diaphragmatic Hernia is still not known but it
     has been associated with several genetic anomalies such as Fryns
     Syndrome, Cornelia deLange System, Trisomy 18, 21 and 22.
 •   Is has been suggested in some medical journals, but not proven, that
     thalidomide, quinine, phenmetrazine and nitrofen may cause CDH. A
     Vitamin A diet deficiency is known to cause CDH is lab rats.
 •   20% of CDH pregnancies also are diagnosed with polyhydramnios, an
     over abundance of amniotic fluid

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           CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

                                                                  In CHERUBS Membership:

                                                                  • CDH has both occurred and not occurred in identical twins.
                                                                  • We have many set of fraternal twins with one baby with CDH and the other healthy
                                                                  • 3 families out of 2500 have had 3 children each with CDH. The reoccurance rate of CDH in sib-
                                                                  lings, without any other birth defects or genetic anomalies is 2%
                                                                  •   Our oldest living survivor of CDH is 62 years old. We have over 100 survivors over 18 yrs old.
                                                                  •   3 of our members, all male, have had 6 CDH repairs each.
                                                                  •   CDH has been diagnosed in utero as early as 10 weeks for several of our members.
                                                                  • Many of our adult survivors have gone on to have healthy babies and pregnancies of their own.
                                                                  Only 2 families have both a parent and a child born with CDH.
                                                                  • Several of our members were diagnosed with CDH after 2 yrs old, with the oldest over 40 yrs old.
                                           In the United States: There are approximately 6 million pregnancies every year throughout the
 United States. 4,058,000 live births. 1,995,840 pregnancy losses. 1 in 2500 babies is diagnosed with CDH. That means over 1600 babies
 are born with Congenital Diaphragmatic Hernia EVERY YEAR in the United States Alone. With a 50% survival rate, 800 of those babies will
 die.. Today, and every day, at least 4 families will be devastated with the news of CDH.

 Worldwide: The World Census Bureau estimates that in 2008 over 350,000 babies are born in the world every day = 147 babies will be born
 with CDH every day. According to the IDB (International Database) from the U.S. Census site, 257 people are born every minute globally. That
 means that somewhere in the world, every 10 minutes a baby is born with Congenital Diaphragmatic Hernia. Every 10 minutes. 1 CDH baby
 every 10 minutes. These numbers add up to over a half million CDH babies since January 1, 2000!

 No one knows the cause of CDH. No one knows how to prevent CDH.
 Hardly anyone knows what CDH is unless someone you love has been
 affected by it. CHERUBS and the CDH Study Group are the only 2                                                     
 organizations actively researching Congenital Diaphragmatic Hernia on a
 global platform. CHERUBS is the only organization offering global support to families of children born with CDH, with members in 38 countries.

 What can you do to help?

 Donate to research. If all of our 2600+ members donated just $10 each we could run the research database and
 site for 5 YEARS. That is 5 years of detailed research involving over 2500 CDH families - which could be the beginning of the end of CDH.
 Raise awareness.,,
 Participate in events.
 Help support CDH families.

 Search & Shop & Donate for free to CHERUBS
 Donate to CHERUBS for free while you search the internet or shop on-line at over
 700 stores!
             Current CDH Research Studies
                                                                                                                 Identify Genes Which Cause CDH
                                                                                                                 Emergen Labs
 Identify Genes Which Cause CDH                                                                                  Salt Lake City, UT
 Massachusetts General Hospital                                                                                  Contact: Mary Meade,
 Boston, MA                                                                                            
 Dr. Patricia Donahue and Lewis Holmes
 Contact: Meaghan Russell, Clinical Coordinator,, (617) 726-0828 Outcome Predictors In Infants w/Congenital Diaphrag-
                                                                 matic Hernias (CDH)
 Fryn’s Syndrome Study                                           The Center for Advanced Maternal Fetal Care
 University of Califonria San Francisco                          Vanderbilt University
 Contact: Anne Slavotinek, (415) 514-1783                        615-936-3412 or 877-338-8786

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       CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

             2008 International Member Conference
                                                                                                            CHERUBS 2008 International Confer-
                                                                                                            ence was held on July 26 - 27 in Ra-
                                                                                                            leigh, NC. We combined the weekend
                                                                                                            with our Angel Ball and Golf Tourna-
                                                                                                            ment and all 3 events were a success!

                                                                                                            The conference was wonderful, over 75
                                                                                                            attended from around the country and
                                                                                                            even Canada. Our incredible guest
                                                                                                            speakers taught our members so much
                                                                                                            and several families volunteered for
                                                                                                            Boston Children’s CDH Research

 project. A huge thank you goes out to Drs. Meagan Russell and Mauro Longoni from Boston Children’s
 Hospital, Dr. Priscilla Chiu from Toronto Children’s Hospital and Brenda Slavin from National Chil-
                                                       dren’s Hospital in Washington DC for speaking to
                                                       our attendees.

                                                       We would also like to thank Shane and Stephanie
                                                       Olivarez, the Grace family, Scott and Penny
                                                       Campsey, Judi Toth, U.S. Metals, Inc., and Or-
                                                       lando Rental Home Services, LLC for spon-
                                                       soring this event.

                                                          We laughed and cried during introductions.
                                                          We played in the park. We had a pizza party.
                                                          We partied at night. The kids had fun with
                                                          Happy Dan, the Magic Man and Hubba
                                                          Bubba and playing in the pool. We all
                                                          learned even more about CDH and CHER-
                                                          UBS. Friendships were made that weekend
                                  that will last a lifetime.

                                  Our 2009 conference will be held next summer in
                                  Texa and our 2010 conference will be in California.
                                  We hope to see everyone there!

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       CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

 On July 26th at Duke Gardens in Durham, NC, CHERUBS held our first annual Angel Ball.
 The crepe myrles and lilies were gorgeous outside and the flowers were stunning inside. The
 food was amazing, created by several local caterers who indeed created "An Angelic Taste of
 the Triangle". The band was rock'n! The Master of Ceremonies was charming. The
 hostesses were beautiful. The volunteers were incredible. The auction was wonderful and
 exciting. Baskets from around the world in memory and honor of cherubs were there. The
 raffles were fun. The photographs are stunning. The room was full of angels. We danced,
 we ate, we bid on items and we learned about CDH. All for a great cause and the event was
 fun and enchanting, thanks to our incredible event planners and the ladies at the Raleigh Junior
 Women's Club. The entire night was magical - so magical that we even had a proposal at the
 event! What better compliment is there than that?

  Our 2008 CHERUBS Golf
   Tournament was a lot of
    fun! Local radio disc
 jockey “Bob the Blade”, our
 amazing volunteers and the
 wonderful players made it a
    day to remember. A
 special thank you goes out
  to our wonderful sponsor,
   Teleflex Medical! It was
      hot. Very hot at 97
  degrees in Raleigh on July
  28th but it was worth it as
       we raised tons of

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       CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

              2008 Ohio Picnic

                         2008 Jeremiah’s Car Show
 Below are photos from Jeremiah's car show for CDH. Saturday September 20th 2008 in Ashley, Ohio.

                                                                                We raised $830 total through open donations to register cars and
                                                                                several raffles. The main raffle being a fully restored 1940 pedal
                                                                                car, compliments of Jeremiah's Uncle Bryon and family friend
                                                                                Bud Lemley. The parts to the car were donated to us by Tom
                                                                                and Sindy Kohler of Cardington. We also had birthday cake for
                                                                                Jeremiah and a balloon launch. Proceeds were split between
                                                                                CHERUBS and Nationwide Children's Hospital's J4 NICU.

 Sarah Deskins
 Ohio State Representative & Jeremiah’s Mom

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    CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

 Faith’s Blood Drive and
                                              More Event Photos!


 New England Zoo Trip

        Pennsylvania Camping Trip
The Silver Lining Newsletter                                          V o l um e XI II, Is s u e 2 , 2 0 0 8, P a ge 9
         CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

     We Would Like To Thank The Following For Their Donations:
 In Honor of:                                                         Amy Cook
                                                                      Ann Close
 Baer Brogdon - Lynn Brogdon                                          Brian Austin
 Braden Holt - Paula Manerchia                                        Chester Choi
 Cole Campsey - Scott and Penny Campsey                               Craig Hartner
 Courtney Young - Wanda Young                                         Dr. Patricia Donahoe
 David Wright - Capital One Associates Political Fund                 Elizabeth Morse
 Gus Ginder - Lisa Schoenherr                                         Emily Elizabeth Satz
 Harry Amo - Aimee Elizabeth Amo-Paul                                 Harry Amo
 Jackson Walker - Brandi Walker                                       Jennifer Livernois
 Kaitlyn Breen - Charles and Kathleen Breen                           Jenny Lutkins
 Mason Robert Young - Cynthia Young                                   JoAnn Cooke
 Maxwell Lazarus Walker - Michelle Craine                             John Fishel
 Maxwell Lazarus Walker - Lynn Compton                                Jonathan and Paula McChristian
 Maxwell Lazarus Walker - Richard Larys                               Joyce Clark
 Maxwell Lazarus Walker - Robert Onesko                               Kimberly and John Stephany
 Ross Vosburg - Barbara Vosburg                                       Kristin Purdue
 Seth M. Suyama - Mark and Tracie Suyama                              Libbie Miller
 Shelby Olivarez - Attica Family Campground                           Lisa Konicki
 Shelby Olivarez - DeBueler Studio                                    M. J. Taylor
 Shelby Olivarez - Shane and Stephanie Olivarez                       Margaret Wright
 Shelby Olivarez - Shelly and Rick Abbott                             Maria Len Dinoia
 Shelby Olivarez - Shepard’s Chevrolet Pontiac Buick Cadillac, Inc.   Mark Jacober
 Shelby Olivarez - U.S. Metals, Inc.                                  Melissa LeClair
 Shelby Olivarez - Women of The Moose, Manitou Chapter No. 1684       Michele Lanham
                                                                      N Salazar-Austin
 In Memory of:                                                        Pamela Johnson
                                                                      R.W. and J.G. Wertz
 Abigail Taylor Long - Douglas Taylor                                 Regina Patterson
 Autumn Nicole Turner - David Turner                                  Richard Berg
 Bridget Hope Jussaume - Anne Callahn                                 Rosemary Micklewright
 Chase Daniel Steiner - Robert and Sharon Kording                     Sandhya Bhupathi
 Christopher Michael Toth - Judi Toth
 Christopher Michael Toth - Susan Toth                                Corporate Donations / Sales / Events / Fundraisers:
 Drake Alexander Michel - Kori Savage
 Ethan James Moloney - Keith and Lynette Moloney                      America’s Charities
 Ethan William James Marchand - Melanie Morningstar                   American Party Rentals
 Faith Grace Miles - Amy and Steve Miles                              Amy Brown Art
 Faith Grace Miles - Barbara Wagner                                   Bartending Unlimited
 Faith Grace Miles - Becky Orfin                                      Becky’s Dream Cakes
 Faith Grace Miles - David and Laurie Joos                            Bridget Ketron
 Faith Grace Miles - Kenneth and Bonnie Schaeffer           
 Faith Grace Miles - Kimberly Martin                                  Cake Crazy
 Faith Grace Miles - Pamela Sroufe                                    CHERUBS Australia
 Faith Grace Miles - Robert Grace                                     Cupcake Envy
 Gabriel Eric Nava - Ann Fournier                                     Dr. Mauro Longoni
 Gabriel Eric Nava - Big Y Foods                                      Dr. Meaghan Russell
 Gabriel Eric Nava - Nate & Corin Nava, Gabe’s Truffle Sale           Dr. Priscilla Chiu
 Hector M. Jimenez - Friends and Neighbors                            Eno River Eatery
 Hector M. Jimenez - Janice and Robert Grant                          Entrée Vous
 Hector M. Jimenez - Dale and Bertha Winnings               
 Hector M. Jimenez - Erin Rectenwald                                  Giorgios Hospital Group
 Hector M. Jimenez - John and Marianne Corbett                        GMAX Express, Inc.
 Hector M. Jimenez - Robert Balint                                    Jennifer Brighton Designs
 Hector M. Jimenez - Walter and Rose Carpenter                        S.M. Wilson & Co.
 Jeremiah Deskins - Sarah Deskins, Jeremiah’s Car Show                JenSea Solutions
 Jonathan Luke Rademaker– Pete and Amy Rademaker                      Jon Blu Salon & Spa
 Kaitlyn Smith - HQ I Infantry Division, Ft. Riley, KS                Kitchen 14 Catering
 Kaitlyn Smith - Leonard Brunk                                        Mez
 Kissen Morgan - Enrico and Mary Furgiuele                            Nine One Nine Marketing Co.
 Madison Brooks - Christie Brooks                                     Not Just Cakes
 Paul Elko - Dolores Citriniti                                        Pomodoro Italian Kitchen
 Sarah Marie Reed - Bob and Valerie Southwell                         Signature Events
 Sarah Marie Reed - Carol Sivard                                      Simply Cakes
 Sarah Marie Reed - Louis Priest                                      Stoneage Romeos
 Sarah Marie Reed - Louise Priest                                     Teleflex Medical
 Sarah Marie Reed - Victoria Miller                                   The Arti Depatment
 Shane Torrence - Craig and Dawn Williamson                           The Easel
 Shane Torrence - Jaye and Paige Thomas                               Tournament Promotions
 Shannon Crawford - Steve and Kate Crawford                           U.S. Foods
                                                                      United Way of Northern Shenandoah Valley, VA
  on-Specified Donations:                                             Victorian Seasons
                                                                      Wakefield Plantation
 Adam McCarthy

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        CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

                      Welcome to the Following New Members:
                                  (+ 90 more new members who did not want their cherub’s name published)
  Baby Sandoval                   Luke James Daigle                      Evelyn Ann Heaps                   Noah McDaniel
  Baby Abramowitz                 Alexandra Clair Damico                 Ayden Kristopher Henderson         Ashley M McGee
 Jack Antoine Abribat             Jackson Dean Dandurand                 Caleb Francis Hennebury            Claude Strother McGlberry
 Hunter James Alexander           Savanna Saige Davidson                 Zoe Holtz Henry                    Anthony Ray Meier
 Megan Jane Allinson              Justin Robert Demars                   Ryan Daniel Hentosz                Ellie Meier
 Abigail Grace Ammeraal           Kevin Obrian Destin                    Harry James Hicks                  Makenna Nicloe Michael
 Justin Wright Anderson           Teressa Gianna Faustina Diprimio       Justin Michael Hildebrandt         Drake Alexander Michel
 Lasse Lupo Ra Andringa           Kylie Don't Know Dudley                Orion Montez Hill                  Faith Grace Miles
 Aira Yvonne Bobiles Aniate       Alex Firmin Duguay                     Colton James Hillsinger            Dallas Ann Lynn Miller
 Davis Michael Ashworth           Jackson Levi Durst                     Chloe Sue Hiscock                  Ellie Miller
 Faith Marie Atkins               Alexander Paul Easley                  Jeremiah N Hoene                   Gavin Michael Miller
 Isabella Rose B                  Unnamed Edelson                        Tierney Elizabeth Hohman           Brianna Marie Mills
 Ines Bahurel                     Noah Patrick Elko                      Anthony Joshua Holland             Elli Mills-Mair
 Kyle James Barbee                Sprout Endsley                         Braden Robert Holt                 Shawn Douglass Mixdorf
 Edward David Barlow              Henry Christopher English              Aoife Required Hopkins             Ryder Douglas Gregory Moorehead
 Skylie Paige Bass                Calvin Erasmus                         Alina Houchin                      Joshua Samuel Moran Lopez
 Brady Edwin Sundt Baumann        Jackson Ivey Evans                     Zenny Joshua Humphrey              Faith Morgan
 Amy Belmonte                     Rihanna Kristine Fajutrao              Candice Hunt                       William Ethan Morgan
 Matthew Aiden Benkendorf         Oliver Lee Farrugia                    Matthew Eric Bruce Hunt            Rayne Patrick Moxham
 Faith Olivia Bennet              Elijah FAUST                           Evelyn Marie Hutchins              Jessica Kate Murphy
 Kyle Bernier                     Yazmin Caridad-Virginia Filpos         Baby Irvin                         Taylor Marie Murphy
 Elisha James Bold                Aaron Ray Fishgrab                     Kaylee Marie Izzett                Ethan Andrew Murray
 Alec Edward Bonser               Jason John Flak Madelyn Rae Flannery   Morgan Marie Jackson               Thomas Mike Nash
 Landon Tyler Boothe              Max Garrett Foshe                      Dylan Reed Jasmin                  Drake Andrew Neeley
 Victoria Botero                  Kirsten Jewell Foster                  Rachel Lauryn Johnson              Amelia Rose Neill
 Harrison Michael Bowden          Tia Kaye Frazer                        Taylor James Johnson               Nayeli Faith Nelson
 Kynlee Bree Bowlin               Brandon Christian Frush                Jayden Jonathan Jones              Amelia Newman
 Alyssa Nicole Bradshaw           Ethan Chung To Fung                    Luke Meredith Jones                Charlotte Anne Nicholls
 John Brannigan                   Steven Allen Furman                    Taylon Mitchell Jones              Shane Allan Ohlemeyer
 Serena Grace Brent               Augustus "Gus" B G                     Sedrick Antwyone Jordan            Joseph Macgarvey Olson
 Benjamin Seth Bright             Courtney Stavis Gabbett                Aiden Michael Kern                 Mila Olson
 Baer Kellam Brogdon              Kenadee Lanz Gallagher                 Grady Thomas King                  Gian Matthew Evangelista Ordinario
 Lila-May Marie Brooks            Gavin William Galler                   Gabriel Kolacia                    Juan Damian Ornelas
 Ayda Rose Browand                Steven Tyler Gartman                   Reese Renee Kostjuk                Andrew Joseph Pacan
 Kaden Michael Brown              Samara Garza                           Kaden Alex Kuehl                   Baby Pannell
 Andrew Martin Burdette           Olivia Annette Gates                   Justin Brodie Labudda              Cameron Louise Parson
 Nikolas Antonio Burks            Cailynn Nicole Gdowski                 Antonio Jose Lagua                 Aimée Elizabeth Paul
 Tia Lillie Byron Mcdonnell       Jade Alexandra Genys                   Sono Darshan Lal                   Laurie Ann Paul
 Donyae C                         Eric Tyler Gibson                      Natalia Milagros Lapene            Weslee Raymond Paxson
 Kaitlyn Elizabeth Calhoun        Sam Required Gibson                    Peyton Elizabeth Laricks           Jack Warren Payne
 Logan James Campbell             Matthew Brian Gislason                 John Michael Larson                Baby Frederick Payne
 Cole Patrick Campsey             Evelyn Marie Godsey                    Annalise Lawrence                  Daniel Patrick James Pearson
 Joshua Isaiah Candelario         Serra Meghan Golden                    Undecided Lay                      Katie Grace Pekowski
 Sofia Marie Carman               Brady Douglas Good                     Anthony Christopher Lazzaro        Gabriel Perez
 Laila Alana Carrero              Ashley Deanne Graeber                  Seth Lewis                         Grant Perry
 Kristian Abel Carrion            Holden Wade Graham                     Autumn Rae Lindsey                 Aiden Derrick Plaisted
 Adele Rosalie-May Carty          Elizabeth Jo Gray                      Mason John Linehan                 Noah Barney Polacska
 Koleka Julia Casimir             Jacob Green                            Brennen M Loftus                   Johnathen Alexander Porter
 Dakota Sherdell Gene Cawvey      Jordan A Green                         Owen Isaac Looney                  Ethan Dhiren Praisoody
 Miles Whalen Lloyd Chamberlain   Elizabeth Jeannette Griffin            Juan Pablo Lopez-Arce              Kellan Floyd R
 Undecided Cheek                  Jackson Griffin                        Preston Blake Love                 James Randazza
 Juan Camilo Cheng                Jaydee Aspen Griffith                  Joshua Scott Low                   Danielle Marie Ranta
 Bobbie Jo Ann Chitwood           Gunner Alan Grubbs Kelley              Isabelle Marie Lyons               Elliott Arcile Reed
 Drake Jeffrey Dean Clark         Matthew Angel Guzman                   Troy Dean Maben                    Required Required
 Hunter Thomas Cobb               Isabel H                               Roxi Janet Macalister              Philip "Par" Andrew Rich
 Olivia Grace Coleman             Madison H                              Jacob Benjamin Maddox              Olivia Raine Richards
 Federico Contu                   Ryan Scott Holman                      Adam Joseph Mafi                   John Anthony Riggs
 Maurice Deshun Cook II           Sade H                                 Caleb Martin Maldonado             Jebediah Landon Rine
 Nanette Jo Cooke                 Laycee Renae Haines                    Ethan William James Marchand       Adrian Deylan Rivera
 Susan Elaine Courim              Jacob Ray Hall                         Amy Catalena Martin                Weston Nicholas Rogers
 Rachel Grace Cox                 Gavin Eugene Halow                     Clayton Mast                       Baby Rossi
 Grayton Karleigh Creekbaum       Sher Hamid                             Elias Patrick Maté                 Kayla Rubio
 Jasiah Alexavier Cross           Jackson David Haney                    Kayden Charles May                 Logan James Samples
 Colton M Crum                    Elijah Brian Harkins                   Jaxson Isaac Mayer                 Brandon Antonio Sandoval
 Seth Lee Curtis                  Aidan Dominic Hartley                  Tyson Jonathan MccCaffrey          Pablo Santa-Isabel
 Leann D                          Eli Braeden Hassett                    James Thomas McClellan             Berlyn Renee Schipp

The Silver Lining Newsletter                                                                     V o l um e XI II, Is s u e 2 , 2 0 0 8, P a ge 1 1
        CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

 Camdyn Gage Seay                  Cole Alexander Spurlin         Jacob Wesley William Thompson             James Michael Weires
 Sneha Anne Senthil                Justin Thomas Starling         Baby Toews                                Heather Patrick Weisenfels
 Caitlyn Elisabeth Marie Setting   Baby Starling                  Ryan J Toney                              Judy K. Wells
 Bram Stephen Sewell               Joshua Lee Stauring            Noah Tracy                                Kinzie Raye Wertz
 Gunner Cade Shobe                 Marley Jane Steingass          Autumn Nicole Turner                      Leanne Renae Wheatley
 Louis Joseph Simpson              Sydney Ann Taborelli           Michael Jayden Robert Valasek             Chastity Auron White
 Karan Singh                       Jude Marie Cabitingan Tan      Seth Van Dyke                             Kristen Brooke Wilson-Sunderland
 Andrew Travis Smith               Skyla Manawa Temaipi           Lucy Sofia Vaz                            Jaelyn Mariana Sania Wright
 Kaitlyn Nichole Smith             Anthony Charles Thomas         Colin Joseph Verwiel                      Hayden Michael Zimmerman
 James Aidan Spada                 Garreth Mervyn Thomas          Vincent Michael Vogan
 Jaret Paul Spelich                Amaiya Annalyce Thompson       Sophie Wakelin

                            This Newsletter Is Dedicated to the memories of:
 Megan Jane Allinson               Aaron Ray Fishgrab            Ethan William James Marchand              Olivia Raine Richards
 Isabella Rose B                   Max Garrett Foshe             Clayton Mast                              Kayla Rubio
 Kyle James Barbee                 Kirsten Jewell Foster         Elias Patrick Maté                        Logan James Samples
 Skylie Paige Bass                 Tia Kaye Frazer               Tyson Jonathan McCaffrey                  Camdyn Gage Seay
 Brady Edwin Sundt Baumann         Brandon Christian Frush       Claude Strother McGilberry                Karan Singh
 Alec Edward Bonser                Steven Allen Furman           Drake Alexander Michel                    Kaitlyn Nichole Smith
 Landon Tyler Boothe               Steven Tyler Gartman          Faith Grace Miles                         Joshua Lee Stauring
 Serena Grace Brent                Jade Alexandra Genys          Dallas Ann Lynn Miller                    Jude Marie Cabitingan Tan
 Andrew Martin Burdette            Serra Meghan Golden           Gavin Michael Miller                      Skyla Manawa Temaipi
 Nikolas Antonio Burks             Holden Wade Graham            Brianna Marie Mills                       Amaiya Annalyce Thompson
 Tia Lillie Byron McDonnell        Gunner Alan Grubbs Kelley     Elli Mills-Mair                           Jacob Wesley William Thompson
 Kaitlyn Elizabeth Calhoun         Madison H                     Shawn Douglass Mixdorf                    Autumn Nicole Turner
 Logan James Campbell              Sade H                        Jessica Kate Murphy                       Seth Van Dyke
 Joshua Isaiah Candelario          Jackson David Haney           Drake Andrew Neeley                       Lucy Sofia Vaz
 Laila Alana Carrero               Ayden Kristopher Henderson    Joseph Macgarvey Olson                    Colin Joseph Verwiel
 Kristian Abel Carrion             Harry James Hicks             Gian Matthew Evangelista Ordinario        James Michael Weires
 Hunter Thomas Cobb                Evelyn Marie Hutchins         Aimée Elizabeth Paul                      Judy K. Wells
 Grayton Karleigh Creekbaum        Morgan Marie Jackson          Weslee Raymond Paxson                     Leanne Renae Wheatley
 Alexandra Clair Damico            Taylon Mitchell Jones         Jack Warren Payne                         Chastity Auron White
 Alex Firmin Duguay                Owen Isaac Looney             Aiden Derrick Plaisted                    Jaelyn Mariana Sania Wright
 Jackson Levi Durst                Jacob Benjamin Maddox         Noah Barney Polacska
 Yazmin Caridad-Virginia Filpos    Caleb Martin Maldonado        Elliott Arcile Reed

      We Would Like To Thank The Following For Their Gracious Help & Sponsorships
 106.1 Radio                          Dr. Jacob C. Langer              JenSea Solutions                  Sarah Deskins
 American Party Rentals               Dr. Kevin P. Lally               Jessica Gibbs                     Sarah P. Duke Gardens
 Amy Brown Art                        Dr. Mauro Longoni                Johnson Lexus                     Sarah P. Duke Gardens
 Anna Beltran                         Dr. Meaghan Russell              Jon Blu Salon & Spa               Scott & Penny Campsey
 Annie Goldman Photography            Dr. Michael Harrison             Judi Toth                         Shane Wagner
 Annie Goldman Photography            Dr. Pam Lally                    Kara Hess                         Signature Events
 April Ellerbe                        Dr. Patricia Donahoe             Kate Crawford                     Signature Events
 Barbara Wagner                       Dr. Priscilla Chiu               Keith Todd                        Simply Cakes
 Bartending Unlimited                 Durham Visitors Bureau           Kimberly Switzer                  Southern Bride & Groom
 Becky’s Dream Cakes                  Elaine Moats                     Kitchen 14 Catering               Stephanie and Shane Olivarez
 Bethany Gillham                      Emory Lane Photography           KSI Catery                        Tania Smythe
 Bob the Blade                        Eno River Eatery                 Leah Bowman Photography           Tara Hall
 Bob The Blade                        Entrée Vous                      Lise Dill                         Teleflex Medical
 Brenda Slavin, RN                    Fernanda Arce                    Lynne Brogdon                     The ARC of Chapel Hill
 Brendan J. Jones                     Flashbacks by Red                Mez                               The Art Department
 Bridget Ketron                       Giorgios                         Michelle Houghton                 The Bride’s Book
 Brier Creek Country Club             Happy Dan, the Magic Man         Mike Stalls                       The Easel
 Cake Crazy                           Heidi Cadwell                    Mrs. North Carolina               The Grace & Miles Family
 CHERUBS Australia Members            Heritage Golf Club               Nine One Nine Marketing           The Stoneage Romeos
 Corin and Nate Nava                  Hubba Bubba                      Not Just Cakes                    Tournament Promotions
 Craig Williamson                     Jacquetta Taborn                 Orlando Rental Home Services      U.S. Metals, Inc.
 Cupcake Envy                         Jason Kerley                     Pat Richardson                    Victorian Seasons
 Danielle Kessner                     Jay White                        Patricia Jones                    Wakefield Plantation
 Darlene Silverman                    Jean Lewis                       Pomodoro Italian Kitchen          Wendy Petty
 Dave & Jean Williamson               Jeanne Nava                      Rachel Pierce                     Womble Carlyle Sandridge & Rice, PLLC
 Dave and Jean Williamson             Jennifer Brighton                Rachel Wells                      ~ Celebrities who donated to our auctions

The Silver Lining Newsletter                                                                   V o l um e XI II, Is s u e 2 , 2 0 0 8, P a ge 1 2
       CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

   “Cooking With Cherubs” Vol. III
                                                                         "When it seems that our sorrow is too great to be borne,
                                        Even more recipes in                          let us think of the great family
                                        the third volume of          of the heavy-hearted into which our grief has given us entrance,
                                        our cookbook,                                          and inevitable,
                                        “Cooking With Cher-                                we will feel about us,
                                        ubs!”. Recipes                            their arms and their understanding."
                                        come from families
                                        and friends around                                   - Helen Keller
                                        the world, making
                                        this cookbook an
                                        international source
                                        of meal and dessert
                                        ideas. You can pur-
                                        chase them on-line
                                        through our
                                        cafepress store at

  Submitting Stories and Photos
       for Our Newsletter
 If you would like to make a newsletter submission please e-
  mail your story or photo to
   You can also send your story by postal mail but we prefer
    e-mail that so we don’t have to retype. You must be a
   member of CHERUBS who has given publishing permis-
  sion on your membership form to have your story or photo

  Gabriel’s Gifts
                                              Gabriel's Gifts is a
                                              project we started
                                              to provide new
 and expectant parents of CDH babies with gift bags. We all
 know how difficult it is to have a child with CDH living in the
 NICU fighting for life, and hope that these bags will bring a
 little comfort to those families.

 In these bags we hope to include items such as a baby blanket/
 quilt, eye cover, hat, booties, journal, pens, disposable camera,
 childrens book, lip balm, CDH information packet, gift cards,
 and any other comfort items that may be helpful.

 We are in desperate need of donations to put these bags
 together. For $20 you can sponsor a gift bag that will help a
 family in need. In exchange for your sponsorship we will
 include your cherubs story in the sponsored bag. We also
 would greatly appreciate in-kind donations of any of the above
 items. If you would like to donate some items or would like to
 sponsor a gift bag in honor/memory of your cherub please
 contact Corin at

The Silver Lining Newsletter                                                                  V o l um e XI II, Is s u e 2 , 2 0 0 8, P a ge 1 3
       CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

                      State & International Representatives
 Country / State     ame                 Phone             CHERUBS E-Mail                       Web Site / Blog

 Australia          Danielle Kessner     03 5135 6999       
 Australia          Angela Logozzo       02 47740470   
 Australia          Sharon Knott         08 9304 2583     
 Canada             Kim Switzer          204-687-8995   
 Great Britain      Brenda Lane          01553 762 884      
 Great Britain      Kevin Lane           01553 762 884      
 Great Britain      Rachel Wyatt         01908 565 574     
 India              Shankari Murali      +91-80-25283423    
 Ireland            Liz Dunne                    
 Mexico             Fernanda Arce        55249924
 New Zealand        Tania Smythe         03 4727321
 New Zealand        Sonia Stuart         09-4353070
 Papau New Guinea   Danielle Kessner     03 5135 6999       
 Scotland           Marie Brown          01389 380120
 Arizona            Krista Bold          480-882-9449
 California         Tammy Spohr          530-273-2156
 Colorado           Tracy Meats          307-362-9630     
 Connecticut        Corin Nava           401-524-9182      
 Connecticut        Jeanne Nava          401-578-8279      
 Indiana            Stephanie Olivarez   574-224-2223  
 Iowa               Sarah Godsey         208-755-7772
 Louisiana          Ashley Jackson       225-271-4096
 Maine              Jeanne Nava          401-578-8279      
 Maine              Corin Nava           401-524-9182      
 Maryland           Brenda Slavin        443-624-2187
 Massachusetts      Jeanne Nava          401-578-8279      
 Massachusetts      Corin Nava           401-524-9182      
 Massachusetts      Joelene Ross         508-904-1503      
 Minnesota          Melissa Glennie      952-240-3451   
 Montana            Elaine Moats         406-234-5038
 New Hampshire      Jeanne Nava          401-578-8279      
 New Hampshire      Corin Nava           401-524-9182      
 New Jersey         Jeanne Nava          401-578-8279      
 New Jersey         Corin Nava           401-524-9182      
 New York           Jeanne Nava          401-578-8279      
 New York           Corin Nava           401-524-9182      
 North Carolina     Dawn Williamson      919-610-0129
 North Dakota       Elaine Moats         406-234-5038
 Ohio               Sarah Deskins        419-512-3446   
 Ohio               Tara Hall            614-275-0858      
 Pennsylvania       Kate Crawford        412-414-7073  
 Pennsylvania       Andrea Ryan          610-927-9356
 Rhode Island       Corin Nava           401-524-9182      
 Rhode Island       Jeanne Nava          401-578-8279      
 South Carolina     Lynne Brogdon        864-627-8644
 South Dakota       Elaine Moats         406-234-5038
 Texas- S           Melissa Kelly        361-288-4698     
 UtahS              Kimberly Byington    801-814-1514
 Vermont            Jeanne Nava          401-578-8279      
 Vermont            Corin Nava           401-524-9182      
 Virginia           Penny Campsey        434-432-2166
 Washington         Georgia Gebow        360-691-5974
 Washington DC      Brenda Slavin        443-624-2187
 Wyoming            Tracy Meats          307-362-9630     

                                         Volunteering at CHERUBS
   Volunteering at CHERUBS, fun and helps CDH families! Some volunteer positions take as little time as 1 hr per month.
   CHERUBS runs solely by volunteers and we can use all the help that we can get! If you would like to volunteer, please
                      contact Stephanie (Representative Coordinator) at
                            or Barb (Committees Coordinator) at

The Silver Lining Newsletter                                                                 V o l um e XI II, Is s u e 2 , 2 0 0 8, P a ge 1 4
      CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

       Ever since our daughter Olivia passed
 away in Sept 2002, we have wanted to start a
 foundation in honor of her. Her life and death
 has made such an impact on our lives that we
 wanted to find a way to help others who may
 be going through a similar experience. After
 many years of planning comes the Olivia
 Raine Foundation.
       The Olivia Raine Foundation is designed
 to offer financial assistance to families who have had an infant pass way, for any reason, with funeral expenses. Many
 funeral homes discount funeral services for infant funerals but for some there are still costs involved. The goal of the
 Olivia Raine Foundation is to help any family who is in need of financial assistance with their infant’s funeral in order to
 provide a beautiful service and final resting place for their infant without the added stress of the cost. These families are
 already dealing with the emotional stress of their loss and we want to be available to help relieve the financial stress.
       To receive assistance, families can go to our website at and go to the financial assistance page
 and complete an online form. The form will require information such as the costs that you are requesting to be paid and
 the funeral home and/or cemetery you will be using. Someone from the foundation will then contact the family or the
 person representing the family. If you do not have internet access you can contact the Olivia Raine Foundation at 1(888)
 743-0950. I am also open to any comments, questions or ideas and I can be contacted at

 Kimberly Richards
 The Olivia Raine Foundation

 The Jack Ryan Gillham Foundation is an organization committed to providing support to the families of critically ill
 children so that they may devote complete attention and care to the needs of their child.

 In a nutshell, we offer financial help to the families of sick babies who will have long hospital stays. We will help by
 paying travel expenses in the form of gas cards, utilities, rent (mortgage), car payment, etc. Our assistance will not ex-
 ceed $1,000.00 per family.

 The application is simple. We have applications available at Arkansas Children's Hospital NICU, but that probably
 won't help people much. :) So, people can email me at and just request an application. We
 ask that people provide basic information and let us know what expenses they will be using our donation toward. We
 also require two references in the form of medical professionals. For example, the baby's Doctor or Nurse and one per-
 sonal refernce.

 Of course, people can always find out more info by visiting our website at

 Bethany Gillham
 Jack Ryan Gillham Foundation

The Silver Lining Newsletter                                                          V o l um e XI II, Is s u e 2 , 2 0 0 8, P a ge 1 5
       CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

                                         Stories of Cherubs
 Frankie Pearl Talbot
 We first found out we were pregnant with our first baby boxing day 2006, from that day I
 was really excited but also scared and worried all the time, I just felt like something wasn't
 right. I had an uncomplicated pregnancy and our 9 and 18-week scans were fine, so I
 began to worry less and look forward to our baby more and more.

 At 32 weeks we decided to finish all of our baby shopping to make sure we were organ-
 ised and also decided to have a 3d scan just to see a more detailed picture of our baby.
 Well we sure got a lot more than that!! Throughout the scan the sonographer looked
 concerned but I didn't worry to much about that. We were told to wait in the waiting room
 for our pictures to be printed. After about 5 minutes we were asked to come back into the
 room and told not to be alarmed but to head straight to the womens and childrens hospi-
 tal as it appeared as though part of the babies stomach was near its heart. Of course we went straight there, both crying our
 eyes out the whole way. This wasn’t supposed to happen to people like us, we were meant to have a perfect baby in 8
 weeks. The second ultrasound confirmed our baby had CDH. After speaking to a surgeon we decided to have an amnio to
 rule out any other problems, thank god that came back clear. There were no other issues with kidneys, heart or brain and
 we were given an 80% survival rate and told to be "cautiously optimistic". Then the waiting game began, which was terrible
 and I wouldn’t wish it on my worst enemy.

 At 39 weeks our ob decided I should be induced so the staff of the PICU were all ready for our baby. On Wednesday the
 15th of August our Frankie Pearl arrived, only to be taken straight to the resus room, followed by her daddy. 3 hours later I
 was taken to see her. She was, like a CDH babies, hooked up to what seemed like a thousand tubes and wires but only on
 minimum ventilation, and quiet stable. She remained that way, which surprised the doctors and nurses, until Saturday when
 she was scheduled for surgery. Surgery was a success, they were able to close her diaphragm with sutures only, although
 her liver, stomach, bowel and spleen were in her chest. For 2 days she was fine, and then her stomach became really dis-
 tended. The surgeons wanted to do investigative surgery, they feared bowel malrotation. Then at the last minute a sonogra-
 pher was brought in, and he discovered a blood clot in her femoral artery, which was causing lack of blood return from her
 stomach, therefore the swelling. We were glad that meant no more surgery, I suppose it was the lesser of 2 evils. She was
 started on blood thinning injections twice daily.

 On day 9 Frankie was extubated, On day 12 she was moved from intensive care to the ward where she started feeding
 through her NG tube. She took that so well they decided to start her on breastfeeds, she took that so well she lost all tubes
 and monitoring by day 16 and we were discharged on day 20.

 We do know that we are incredibly lucky to have such a healthy daughter, we feel blessed to have her here with us. I have
 learnt more in the time I've had with Frankie than I have ever known, and I will never stop appreciating every moment I have
 with her.

 Written by Frankie’s mom, Carly Mansell (Great Britain)

 Gabriel Eric Nava
 11/18/06 - 1/12/07

 I found out I was pregnant in March of 2006. My husband and I had just started trying and
 were thrilled that it happened so soon. It was defiantly not an easy pregnancy as there
 were minor complications such as bleeding in the beginning and than gestational diabe-
 tes later on. I had bad heartburn, was sick a lot, and gained more weight than I should
 have. But throughout the pregnancy, although I was having some problems I was con-
 tinuously assured that my baby was doing great and was healthy.
 I was scheduled to be induced on November 21, right before Thanksgiving, because of
 the diabetes. However, Gabriel had a different idea. The Saturday before my scheduled

The Silver Lining Newsletter                                                             V o l um e XI II, Is s u e 2 , 2 0 0 8, P a ge 1 6
          CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

 induction, my water broke at 5:40 in the morning. I called my doctor and he told me to go in immediately so they could moni-
 tor my blood sugar. We drove to the hospital and got ready to meet our baby.

 The labor was relatively easy and fast. I didn't start active labor until around 3 in the afternoon and at 5:55pm Gabriel Eric
 Nava was born. That was when everything started spiraling down. Immediately Gabe was having problems breathing so
 they took him away before I got to see him. After over an hour of waiting a doctor finally came back and gave us the news.
 Gabriel had CDH and had to be transferred immediately. They brought him in for me to see in an incubator where I was able
 to touch his hand before they took him away to Women & Infants hospital.

 When we arrived there later that night they had Gabe semi-stabilized and started to explain what was wrong and what
 needed to be done. They hoped to be able to stabilize him there for a few days and than do surgery. The next two days
 were awful. They tried desperately to keep him stabilized by trying different ventilators and settings but his O2 SATS kept
 drifting down. He needed to be transferred again to a hospital that had ECMO.

 They took him by helicopter up to Mass General Hospital and the doctors there put him on ECMO. From then on it was a
 roller coaster ride of emotions. Some days he would look like he was doing great and improving, but there always seemed
 to be another complication that needed to be overcome. Gabriel showed he was a fighter and surprised the doctors a few
 times by overcoming an obstacle they didn't think he would. He was on ECMO for 36 days, which was one of the longest
 stays on ECMO. After multiple failed attempts to take him off he finally came off the day after Christmas and things looked
 good for a while. We were able to hold him for the first time on New Years Day and he seemed to be getting better.

 The problem that he could not overcome was his kidneys. He had become very swollen in the beginning and they couldn't
 seem to get the fluid off of him after his repair surgery. They ended up having to put him on a dialysis machine (CVVH).
 While he was on ECMO it pulled the fluid out of the tubes already attached to him and it worked beautifully. However it also
 shut down his kidneys. When they took him off ECMO they also took him off the CVVH in hopes that his kidneys would start
 working again. After a while when it was clear that they still needed help they tried to put him back on the CVVH. They tried
 three times to hook him up to the dialysis but his body couldn't handle the new demand of the machine.

 The night of January 11th he took a serious turn for the worse. He was severely swollen and now they couldn't keep his O2
 SATS much above 70 even on full support on a Jet Ventilator. There was nothing more they could do. We knew Gabe was
 telling us that he couldn't fight anymore. We had to let go. Early in the morning on January 12th we held our boy for the 2nd
 and last time as he passed away peacefully in our arms. Although he was only here for a short time, he touched so many
 lives as all of these Cherub babies do. He was loved by so many and will always be in our hearts.

 Written in 2007 by Gabe’s mom, Corin Nava (RI, USA)

 Juan Pablo Arce

 I had a rough pregnancy with both of my kids, but with Juan Pablo I was in bed rest since
 week five. I had several blood episodes, placenta abruption, placenta previa, preterm
 contractions, preeclamsia and finally preterm labor at week 36.

 Juan Pablo was born by a c-sec and he was fine the first couple of days, but at day 3 he
 started developing apneas and cyanosis. He was moved to NICU and the doctors per-
 formed several tests on him. Finally at day 15 he was released from the hospital with a
 reflux type 3 diagnosis. He was being checked by another pediatrician back then. but
 after the pneumonia we started seeing a new ped., Dr. Capuano.

 He had several colds and cough in his first three months of life, but when he was three and a half months he was admitted
 to the hospital with pneumonia. We stayed there for 10 days and he was released but his right lung still showed a "blur".

 After three weeks of the pneumonia the "blur" still showed in his chest x rays, so the doctor performed more tests and he

The Silver Lining Newsletter                                                          V o l um e XI II, Is s u e 2 , 2 0 0 8, P a ge 1 7
       CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

 found that his diaphragm wasn't the way it was supposed to be. The doctor told me that this could be an eventration or a
 hernia, but he didn't perform a CT scan on him due to the risk of sedation. Finally after months of seeing him, Juan Pablo
 was finally diagnosed with a Right Sided Eventration and Paralysis of the Diaphragm, a very rare type of CDH.

 I've read a lot about CDH and Juan Pablo's case is not like all the cases I've read. Juan Pablo wasn't diagnosed when he
 was born, he was diagnosed months after and that's rare. Most of the cases I've read about end up in surgery, Juan Pablo's
 doctor won't perform surgery now, but he wants us to meet the surgeon every 3 months with new chest x rays to keep a
 close eye on him.

 Juan Pablo’s reflux gets worse with his CDH, so there is no day where he doesn’t vomit. Some days are less times and
 some days are more. It’s very frustrating for me because I spend my day trying to feed him, cleaning vomit, changing his
 clothes, mine and then trying to feed him again.

 In March of 2008 Juan Pablo was very dehydrated and we were admitted to the hospital right away. The nightmare was at
 the ER because they couldn't find a vein to get the IV in so they had to place a small catheter in a neck vein through a vein-
 dissection (small surgery). It was really a hell for Juan Pablo, cause they had to pinch him several times without success...
 We stayed at the hospital for 5 days and finally he was released drinking liquids enough to go home.

 Juan Pablo ate fine by his first year of life, he only ate Gerber stuff, 2nd stage. But lately it has really become a challenge for
 me to feed my child. During summer all he drank was formula and that’s it. Now I am trying to slowly introduce new foods to
 him, but he’s not the great eater he used to be. He’s developed oral aversions on and off.

 After months of being here at home and barely go out, we ended up counseling and we’re trying to live a “normal” life. Our
 journey hasn’t ended, but we’re trying to make the best out of it.

 My prayers are with all the angels and survivors of CDH.

 Written in 2008 by Juan Pablo’s mom, Fernanda Arce Amaré (Mexico)

 Dakota Mae Vosse
 5/9/06 - 5/8/06

 On October 14, 2005 is when our lives changed forever when I had found out that I was
 pregnant, I was so excited to finally start our own family. We had lost our first baby in
 1998. It took us 8 years to get pregnant again. I told my husband after dinner one night
 that we where expecting and he just had this big smile on his face. He didn't know what
 to say. My first doctor’s visit was on November 1, 2005. Dr. T my OB-GYN checked me
 out and everything was fine. He told me that my due date would be June 24, 2006. I was
 so happy because June is my Mothers birth month. December 2, 2005 was my next ap-
 pointment and He couldn't hear the baby's heart beat so he looked at the baby with an
 ultrasound machine and the baby was OK. At this time I was 10 weeks. I could see Da-
 kota Mae's arms & legs moving all around. I started to cry cause it was so amazing to see
 this baby after loosing our first child. January 11, 2006 I went to Dr. T and he checked me out and said everything was still
 OK. February 6, 2006 was the day I found out there was something wrong with Dakota Mae. The nurse doing my ultrasound
 seen that her left kidney was bigger then the right side. The nurse had taken a lot of pictures to show the doctor. My next
 visit was February 10, 2006. Dr. T explained to me that this could be very serious or it might not be anything. He wanted to
 send me to St. Mary's Hospital to have a level 2 ultrasound done, just to make sure every thing was OK.

  February 27, 2006 a Dr. the Maternal-Fetal specialist at St. Mary's Hospital looked for over a half hour at my ultrasound
 findings. He determined that the baby had CDH aka Congenital Diaphragmatic Hernia. What is this? It is when the dia-
 phragm does not completely close, a hole in the diaphragm where the stomach and the intestines are push up in to the
 chest cavity. Pushing the heart over to the right and putting pressure on the developing lungs not letting them grow. The Dr.
 told us that Dakota Mae would have to have surgery after she was born and even with having the surgery it didn't guarantee
 that she would make it. My Heart just dropped after being told all of that. He recommended that I have an amniocentesis

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      CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

 done, to check and see if she had any other chromosome abnormalities, which could result in more defects. I could have the
 procedure done that same day. I was so upset I didn't know what to do. I called my husband "Thomas" and he said if it was
 in the best interest of the baby then to go ahead and do it. I plan to have it done anyway. I talked to a Genetic Counselor
 that same day. She asked me questions about our family having any birth defects, which could help them determine other
 problems. She also explained what CDH was so I could understand it a lot better.

 February 28, 2006 was the first time I felt Dakota Mae move. She kicked me and I had Tom put his hand on my stomach
 and she just gave him the biggest kick. He couldn't believe it he was so excited. I am 23weeks now. March 8, 2006 was my
 next appointment with Dr. T. He checked me out and every thing was still OK. March 31, 2006 was my next ultrasound ap-
 pointment at St. Mary's Hospital. The nurse checked Dakota Mae and said that she was about 2 lbs 5 oz now and that I'm
 27 weeks 6 days. She took some pictures of Dakota Mae and give them to me and I showed everyone I was so happy but
 so scared at the same time. April 3, 2006 was my appointment at Cardinal Glennon for a fetal echocardiogram, that is an
 ultrasound of the Baby's heart. The nurse there checked Dakota's heart for about a half hour. The Dr. explained that Da-
 kota's heart was pushed over to the right and turned a little, but she said that all four chambers were working properly. That
 was finally some good news for the most part. All this bad news has taken a toll on me.

 April 5, 2006 I went back to see Dr. T and he checked me out, He said that everything was the same and that she was still
 doing ok. On April 8, 2006 was Dakota Mae's baby shower for my side of the family and I had so much fun seeing all my
 family and friends. But I didn't know if it was right to have the shower with Dakota's condition. We received a lot of gifts for
 Dakota Mae, but My favorite gift was a pink blanket that my cousin Rhodie made for her.

 April 11, 2006 I had to go and do my glucose test witch I didn't pass. April 19, 2006 I was back in to see Dr. T and he said I
 had failed both of my tests. Then he tells me that my belly measured at 36cm when it should only be at 30cm at this time.
 Dr. T told me that was a sign of me having gestational diabetes, So he asked me from now on to start going to the OB-GYN
 clinic at St. Mary's Hospital because they could help me allot more. He thought I would be better off because I was already
 going there for all my ultrasounds and other tests. April 21, 2006 I was back at St. Mary's for my 3rd ultrasound and the
 nurse said Dakota was about 3 lbs 8 oz now. I was at 30 weeks 6 days. She gave me some more pictures of Dakotas’s feet,
 butt, and a side view of her face. I was just so happy to see her I started to cry. The nurse that was doing the ultrasound
 noticed that I had a lot of extra fluid around Dakota she asked me to see the Dietitian. I was then diagnosed with Gestational
 Diabetes. April 27, 2006 I was put on a diet and I had to watch what I ate.

  On May 4, 2006 was the start of everything going wrong. My husband’s grandfather passed away and that Sunday May 7th
 was his wake. I was feeling OK at that time but I was tired. May 8, 2006 was the morning of the funeral and my 4th level 2
 ultrasound appointment. As we got done at the church my husband and I noticed that our window was broken on the pas-
 senger side door of our truck. There where some people cutting grass next to the truck, a rock must have gone through and
 broke it. So here I am needing to get to the cemetery and we had to wait for the police to get there. It was not long before
 the police showed up and we then rode to the cemetery with his family and left the truck at the church with a broken window.
 My parents had picked me up at the cemetery to take me to my appointment since Tom had to get the window fixed. I had to
 wait at least an hour before the Doctor could see me because there where a lot of people in the waiting room. I first had to
 see the dietitian and show her my dairy of what I had been eating. When I went in the see the Doctor she was checking me
 out looking for Dakota's heartbeat. She couldn't find it. She then brought in an ultrasound machine to look at Dakota better.
 There still was no heartbeat. The doctor looked at me and said she thinks Dakota had passed away. I couldn't believe what
 she was saying. I Lost It! I look at my Mom and Dad and they didn't know what to think. She went to get 2 more doctors to
 confirm what she had seen and the head doctor did confirm May 8, 2006 that Dakota had passed away within 24 hours. I
 was 33 2/7 week. I was in shock. I called my husband and told him that Dakota had passed away and he was in disbelief.
 When I talked to the doctor I decided to be induced. I told Tom to get to the hospital ASAP. I was taken to my room and that
 night it had all sunk in. My little girl was gone. I cried all night long with my husband at my side. May 9, 2006 my water broke
 at 7:30A.M. and I had Dakota Mae at 11:39A.M.. She was 3 lbs 13 oz ,18" inches long, with blond hair and blue eyes. Da-
 kota had came out breech. I had no problems delivering her. The doctors were so gentle and so caring. I held her for the
 longest time and I didn't want to let her go. My husband, mother, father, and sister where there to support me in this difficult
 time. My pastor and the chaplain from the hospital gave Dakota Mae a blessing. We all took turns holding her and telling her
 how much we Love her and how much will miss her. Dakota Mae was so beautiful she looked just like her Daddy, tall with
 long arms & legs. She had long fingers and big feet too. I was then taken to my new room. My family stayed with me a while
 and then left so I could spend a little alone time with Dakota Mae. I told her how much she meant to me and how much I
 Loved her till about 5:30A.M that next morning. I then had to say my good byes. I didn't want her to go, but I gave her a big
 kiss. I told her that I loved her, and that God would take good care of her and that one day we would be together. I had gone
 home that day and my family was there to comfort and support me when I needed it the most. May 13, 2006 was Dakota

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      CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

 Mae's funeral. All of our family and friends where there to support us. It was hard to say good-bye to my beautiful baby girl
 but I managed to do it. The service was a beautiful service with such beautiful flowers from all her family and friends. I go
 out to the cemetery every chance I get to talk to Dakota and tell her how much we Love her and Miss her.

 I Love You With All My Heart DAKOTA MAE!! I'll Miss you more then you'll ever know. You will live in our Hearts Forever!!
 Mommy's Little "Tomboy Princess"

 We where blessed to find out on May 9th 2007 on what would have been Dakota Mae's 1st Birthday that I would be expect-
 ing again. Dakota Mae now has a baby sister named Amanda Mae.

 Written by Dakota Mae’s parents, Tom and Diane Vosse (IL, USA)

 Ayda Rose Browand

 Hello. My name is Shanell Browand and I would like to tell you my story. It’s about my
 daughter and her struggle at birth. This is a shorter version.

 When I was 17, me and my boyfriend, now my husband found out that we were expect-
 ing. We went through the normal pregnancy stuff, doctors, planning the room, until May
 9, 2007. We went into the doctors to see if we were having a girl or a boy. We found out
 that we were having a girl, but we also found out that she was diagnosed with a birth
 defect called a congenital diaphragmatic hernia. We had no idea what a congenital dia-
 phragmatic hernia was. In Ayda, our daughters cause, we found out that early in gesta-
 tion, her diaphragm didn't completely form, and there was a hole on her left side of the
 diaphragm. Her stomach and her intestines moved their way up through the hole and
 placed themselves where the heart was supposed to be, causing the heart to be where the lungs are supposed to be, caus-
 ing her lungs to not form completely due to the very small amount of room in her chest. They told us that 1 out of every
 2,000 babies are born with CDH. The survival rate is only 50%

 Ever since that day, our lives where forever changed. I was currently in high school, but I dropped out because all of the
 distractions and doctors appointments were a little more important. All I wanted to focus on was my daughter and what was
 going to happen once she was born.

 Late in August, I went into preterm labor and was admitted into the Sacred Heart Birth Place Antepartum. They placed me
 on bed rest and I was having about 4 medications to try and keep me from giving birth. They told me that if I gave birth to
 Ayda right now, she wouldn't survive since she only weighed 5 lbs at the time. I was in Antepartum a month before Ayda
 was born. I couldn't go home, the hospital was about 2 hours away from my house. The hospital was my new home.

 On September 20, 2007, Ayda Rose Browand was born at 4:42pm, weighing 7lbs 11oz. I couldn't hold her. They took her
 over to the bed and cleaned her up as they put her on oxygen. I looked around. My hospital room was full of stress. I had
 my husband, mother in law, mom, grandma, two Antepartum nurses, 2 OB/GYNs, 2 NICU doctors, and 4 NICU nurses. It
 was so stressful! They wouldn't let Ayda cry because they didn’t want more organs to get sucked up into the chest cavity
 and cause even more of a problem. They started to wheel Ayda up to the NICU. Sam followed them and kept on calling me
 with updates.

 Once I was able to go upstairs to see her, I was in shock. The room was full with nurses and doctors, alarms were going off
 saying that her oxygen was to low and her heart rate was too high. They would shoot some medicine into her arm. The
 sound of the ventilator hummed in the background. I wheeled myself over to my precious baby just to see her eyes closed,
 her chest moving not from her breathing, but from the ventilators breathing, and not seeing her wiggle her toes. They had to
 put her on some special medication that would make her not be able to move because she was trying to spit out the ventila-
 tor when she was born. All I could do was pray and stare. I couldn't help her, she couldn't help herself. We were both help-

 The next couple of weeks were like riding a roller coaster. She would do really good, and then she would drop back down. "

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      CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

 45% oxygen ", I starred at the monitor every second, just to make sure she was being a good girl. They said my eyes were
 glued to that thing. I would send Sam up to check on our daughter and the first thing I would ask was " how are her oxygen
 saturations?" She became so unstable that they started to talk to us about " the last resort", ECMO. We decided to say no.
 We didn't want her to suffer any more than she already was. The rest off that night, I was scared that we just let our baby
 pass, I was up about every 3 hours making sure she was okay, calling the nurses over and over. Praying was the main time
 I spent while at the NICU.

 The morning after our decision about ECMO, they told us that Ayda was now stable enough to have surgery. They sched-
 uled it for October 1st, Sam’s sister’s birthday. We were so relieved. Finally, we were moving our way through the tunnel.
 Her surgery went well. A couple of weeks later, she reherniated and a second surgery went through. They had to put mesh
 in to patch the hole. After her surgery, the slowly began bringing down the settings of her ventilator, oxygen, and all the
 other wires and tubes she was hooked up on. When she was off of the ventilator, she was able to eat. At the beginning of
 November, they moved us up to the NICU stepdown unit. That meant we were on our way to going home!

 On November 30th, We were able to go home!!!

 Currently, Ayda is growing like a "normal baby" ( that’s what the doctors say ) She as healthy as she can be! The only time
 she has gotten sick is a cold and stomach flu. She is very social, and she loves, LOVES to talk, play, and smile. I have a
 video on youtube that I made in honor of her. It’s on my profile. I also have a website that I put videos and updates on. Its

 We are so blessed to be where we are now. She shows just how powerful prayer is, how powerful our Lord is! I hope that
 my story inspires people to help find a cause and cure for this terrible birth defect. I am planning a fundraiser in honor of
 Ayda, and there shall be many more to come. She is my inspiration. She is our miracle and I thank God for her everyday.
 God Bless

 Written in 2008 by Ayda’s mom, Shanell Browand (ID, USA)

 Alexander Easley

 It all began when we found out that we were pregnant with our second child. We already
 had a 3-year-old son named Walker so we were ecstatic to be pregnant again. It was a
 normal pregnancy until the end of July 2006. I felt funny that day at work so I went to the
 ER that evening and sure enough I had been having contractions every 1-2 minutes
 apart. The doctor told me I had over done it, put me on medication to stop the labor and
 sent me home on bed rest. Over the next 2 weeks I had been in and out of the doctors
 office with continuing contractions. Finally, they did a third ultrasound, but did not know
 what they were seeing so I was scheduled for a level two ultrasound the following week.
 I went that day in August by myself thinking that it would be nothing and sent my husband
 to work. I laid on the table for over an hour while the technician looked, but said nothing.
 Finally the high risk OB came in and began to look at the ultrasound. Dr. Clark began to
 explain to me that the baby had a Right Sided Congenital Diaphragmatic Hernia and that the intestines were up in the chest
 compressing the right lung. My husband immediately came to the doctor’s office and Dr. Clark went into detail about how
 large the hole was and that Alex would more than likely require ECMO. Dr. Clark then put in a phone call to Vanderbilt Chil-
 dren’s Hospital since they were the closest to specialize in CDH and ECMO. The next day my husband and I were in Nash-
 ville at Vanderbilt meeting with the Neonatologist and Pediatric Surgeon.

 Vanderbilt had arranged for our entire family to move to Nashville (5 hours from home) one week before my scheduled in-
 duction date. Alex had another plan. Two weeks prior to the induction date I began to have more regular contractions and
 went to the ER again. After I was assessed it was determined that I need to be flown to Vanderbilt immediately. So the
 Vanderbilt Children’s Hospital airplane came to the tricities, picked me up and flew me to Vanderbilt. They were able to get
 the labor to stop and I was discharged, but told that I could not leave the Nashville area. My husband, our 3 year old and
 my mother-in-law joined me the next day and we all lived in Nashville for the next two weeks.

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       CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

 The induction began about 11:00 am on September 28, 06. Everyone was ready for Alex to make his entrance. We had 2
 residents, 1 attending, 2 delivery nurses, pediatric surgeon and the entire NICU team waiting and ready. At 4:14 pm Alex
 decided to grace us with his presence and let out 2 little cries before he was rushed to the side to be stabilized. Once he
 was intubated the NICU team rolled him by so I could get a quick glimpse before he was rushed to Children’s. About one
 hour later we received a phone call from Alex's surgeon Dr. Yang informing us that Alex would require ECMO and they were
 going to begin the procedure. Two hours after that Dr. Yang called back to let us know he was okay and they would begin
 the diaphragm repair. Alex was a right-sided CDH with liver and intestines up and not sure if he had any right lung tissue.
 Once the procedure was complete Dr. Yang informed us that Alex did have a right lung, but it was very small. Alex spent
 the next 9 days on ECMO and was finally extubated from the ventilator at 3 weeks old. I so enjoyed getting that first hold
 that I had been longing for. During the weaning from the vent Alex spent some time on Nitric Oxide due to his pulmonary
 hypertension. He was then weaned from NO to CPAP and then to oxygen through a nasal cannula. Alex had been at Van-
 derbilt until December 12, 2006. During this time I would travel the 5 hours every weekend to be with him while my husband
 stayed with our other son. Once Alex was transferred to Johnson City he began to have these episodes of respiratory dis-
 tress every day. These delayed us from being able to come home any time soon. So once again we were living in the hos-
 pital. After 8 months, many intubations for respiratory distress and many infections later Alex was able to come home. Alex
 was home for 1 month when the episodes started back up. He was readmitted to the hospital and finally transferred back to
 Vanderbilt. It was then determined that along with the pulmonary hypertension Alex had tracheomalacia. That is when it
 was decided that he needed a trach and ventilator. Being on the home vent and having a secure airway is really what has
 made the difference for Alex. His breathing slowed down incredibly and he was finally able to start gaining weight. Alex
 came home on August 2, 2007 and has only had a few overnight visits back to the hospital. He still gets medication for the
 pulmonary hypertension and he still has the trach and vent, but is now able to really develop and act like a toddler (just with
 all the medical equipment). My husband and I are so proud of the progress that Alex has made and how strong he is. Alex
 never ceases to amaze us every day. We also give so much love and appreciation to all of Alex's doctors and caregivers
 especially Dr. Yang for giving Alex a chance at life. Thank you to everyone for taking the time to read our story.

 Written in 2008 by Alex’s mom, Donna Easley (TN, USA)

 Weslee Raymon Paxton
 1/16/07 - 1/31/07

 On September 11, 2006 I went in for my first ultrasound, I was so excited because this
 would be my first child! Everything seemed to be going great until that dreadful face ap-
 peared on ultrasound tech’s face, she ended up bringing in the head of the department
 and another doctor, but no one could tell me anything. Fifteen minutes after I left I found
 out that it was possible that my son had CDH on the right side. I was immediately sent to
 a perinatal doctor in my area that confirmed that it was true, except that is was on the left.
 I had an amniocentesis done, but luckily it wasn’t genetic, it also told me that I was having
 a little boy; the news was very bittersweet. My doctor gave me three choices, Riley, St.
 Vincent, or Cincinnati Children’s; having done my research I knew that Cinci was the best
 choice, even though it was almost 3 hours away.

 I went down to Cincinnati on Oct 11 for the usual MRI, ultrasound, and ECHO. At the end of the day I went in for my “Team
 Meeting” where they told me that not only was Weslee’s stomach up in his chest, but his liver was heading that way as well.
 They explained my choices, which included EXIT to ECMO; of course everything at that time sounded like gibberish, I never
 understood a word. They informed me that I would need to relocate down there 2 weeks prior to delivery, that news made it
 all the worse. After all of that life returned to a semi-normal state until I went back down for what I hoped would be a nice
 long stay.

 I went down there on January 1, and delivered Weslee Raymond on January 15. My husband and I chose EXIT to ECMO.
 I was in surgery for what they told me was 4 hours, and Wes came out as fine as could be expected. I spent four days in
 the hospital going to see my baby as soon and as often as I could. He did fine for about the first week, then he started hav-
 ing kidney problems, he was becoming unable to get rid of excess fluids, which they were pumping him full of. He made it 1
 week and 5 days on ECMO. They were doing different tests such as ultrasounds everyday. On that Sunday they found that
 he had a 1cm area on his brain from which he was bleeding because of the blood thinners he was on. They took him off of

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      CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

 ECMO and he seemed to do fine, but he was continually getting bigger from all the fluids. They tried and tried to get him to
 get rid of it, but it just wasn’t happening. On Tuesday everyone could tell that Weslee just wasn’t going to pull through, his
 doctor told us that Wes needed a break in the next 12-24 hours and if he didn’t get that break then there would be nothing
 else that they could do for him. At 7:45am the next morning we got a phone call and my husband and I immediately rushed
 over to the hospital and found that his blood oxygen levels had dropped off and weren’t improving. That was it, the straw
 that broke the camels back.

 We got our family down there that day to meet Wes, everyone got to hold him and share in the bittersweet event we were
 experiencing. We dressed him in a pointy hat and yellow John Deere socks, he looked so cute. I told everyone that day that
 he walked into heaven dragging the blankie his grandma made him, wearing his socks, hat, and diaper proud. I was the
 first and last person to hold him, my little baby boy died in my arms; the date was January 31, 2007. Weslee never suf-
 fered, or so they told us.

 His funeral was the next Saturday. He looked so angelic in striped sailboats. He may have physically left the world, but as
 all little babies do, he made an impact on everyone he met. It has only been 6 months, but it seems like it was just yester-
 day. I am 19, a mother of one, and the strongest person I know. The day I let Wes go was the proudest moment of my life,
 I was doing the most selfless thing that I would probably ever do in my life. I live every day for my son, to make him proud
 of his momma.

 Written in 2007 by Weslee’s mom, Elena Paxon (IN, USA)

 Shelby Grace Olivarez

 We have a daughter Shelby Grace, who was born on July 10, 2006. At 8 weeks into our
 pregnancy we found out we had lost a twin. At 18 weeks in utero we found out Shelby
 had a left sided diaphragmatic hernia. Throughout our many ultrasounds we were told
 that only Shelby's stomach had gone into her left side and surgery would take place. We
 could take our daughter home in a week. OH boy, we were informed wrong.

 When Shelby was born, she came out with a Cliff Lip and was immediately placed on a
 vent. They took her to the NICU, to get her stable. The next day the NICU doctor told my
 husband and I that they could not handle Shelby and she needed to be transported. We
 right then decided to have her baptized. We were not guaranteed that she would make
 the transport. After it seemed like an eternity, Shelby was placed on the actual transport
 and taken on a two-hour ride to the hospital where they could handle her. On our car ride the phone rang and the Doctor
 asked, "is this Shelby’s Mom?" I said yes and feared the worst. "Please get to St. Vincents as quickly as you can, we need
 you to sign the paperwork to place Shelby on ECMO." We arrived and signed the papers and kissed Shelby and hoped for
 the best.

 Shelby remained on ECMO for 7 days. We were told that,” a boring day on ECMO, was a good day." On the ninth day of
 Shelby's life her first Diaphragmatic Hernia was repaired. The Doctor's said the surgery was a 9/10. She would be trans-
 ferred to the NICU the next day to recover. We stayed in the NICU for 53 days. During her time there they worked hard to
 get her off the vent. The Docs tried CPAP twice. The first time was very hard on Shelby. The second time, Shelby soared.
 They were able to put her on Nasal Cannala's!!!

 Just a little heads up....we call Shelby our little butterfly because at the first NICU where Shelby was, they had a butterfly
 with her name on it. That butterfly stayed with Shelby at the new hospital until she was released to come home.

 Shelby had a NG tube in her nose for feeds and had very bad reflux. We had three other kids at home and my husband
 and I would trade off days at home and days at the hospital.

 The day came when we could bring our little butterfly home. We came home with a monitor for her heart and to check if she
 aspirated into her lungs. For the life of me I cannot think of the name of the monitor. We came home to three other little
 girls waiting to meet their new baby sister. I cannot begin to tell you how they have helped in every step with Shelby's re-

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      CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort


 We were home for a few short days and Shelby pulled out her NG tube. We called our surgeon (who by the way is an angel
 walking on earth) and told him the situation. He decided it was time for a G-tube and a Nissen. We stayed at the hospital
 for 5 days and again came home. The next couple of months were great. The G-tube was doing it's job and the Nissen
 helped with the reflux.

 Well in December we noticed blood coming out of her burp tube. I called the Doc and he said it was normal. Ok I thought.
 The very next morning he called back and said that Shelby must have a guardian angel. For he spoke to him and said to
 have Shelby down at the hospital right away. Shelby's guardian was my Grandfather. Who's birthday was December 22.
 The date we went to the hospital was Dec 23rd!! Upon our arrival. they did an x-ray and it was very clear that she had reher-
 niated (spelling). WOW was all we could say. Even our two surgeons had never seen this. Surgery took place and we
 made a quick trip home Christmas Eve. We felt that we could not miss the girls Christmas and Shelby was in the BEST
 place she could be. We returned the next day to the Hospital. Shelby recovered quickly and we came home.

 In January Shelby had her Cliff Lip fixed. This was a hard surgery. Shelby was a thumb sucker and after the surgery we
 had to put arm restraints on her. Shelby lost the desire to suck her thumb.

 Again a couple of months went by and in May we noticed a lot of retching. A trip down to our surgeon's office-a ultra-sound,
 Shelby had a Hiatal Hernia. Surgery took place and once again Shelby was back to Shelby. Retching started again a week
 later. They admitted us in the hospital. You name the test they did it. Finally after a scope, the Doc's realized it was a
 ULCER! We are currently on meds and that problem has been taken of. Shelby has resolved Pulmonary hypertension and a
 narrowing of her Aorta (which we will have checked in 6 months). We were told NO heart surgery. We hope that remains
 the same.

 We are Thankful everyday for our Amazing Shelby Grace. We also live everyday as it comes. We know not what tomorrow
 will bring. We also have realized God will not give you something you can't handle, but sometimes it's hard to feel that way.
 Our hope is for Shelby to live a happy life and now how much we, our family and our friends love her.

 Thanks for letting me share Shelby with you.

 Written in 2007 by Shelby’s mom, Stephanie Olivarez (IN, USA)

  CHERUBS is proud to be a member of
  The Alliance of Congenital Diaphrag-
  matic Hernia Organizations
  (ACDHO). ACDHO is a group of
  CDH organizations, clinics and re-
  searchers working together to help
  families of children born with CDH
  through joint research, events and


      The information on all pages of this newsletter are for education only. It is not meant to be used in place
     of proper medical care and advice. CHERUBS does not encourage or discourage any medical treatments or
     procedures. Our purpose is to educate families and medical care providers so that they may make the best
      decisions for the patients’ interests. You cannot compare your child to other children born with CDH, they
     are all different. The opinions aired here by members are not necessarily the views or opinions of all mem-
                                               bers, staff or of CHERUBS.

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     CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort
 We have lots of new items in our stores!
 Over 1000 different CDH awareness
 items are available in our Cafepress and
 Zazzle shops.

                                      On-Call Volunteers
  Do you need to talk? These parents would be glad to take your call or e-mail to lend you an ear or a shoulder.
    Expectant Parents

    Kerrie Chamberlain                 541-664-9016               
    Tammy Spohr                        530-273-2156               
    Kate Crawford                      412-414-7073               

    Grieving Parents

    Freedom Green                      410-363-7465               
    Danielle Kessner                   03 5135 6999 (Australia)   

    Parents of Survivors

    Elaine Moats                       406-234-5038               
    Tara Hall                          614-275-0858               
    Andrea Ryan                        610-927-9356               
    Ashley Jackson                     225-271-4096               
    Daniel Hunter                      423-954-9114               

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    CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

   Photos of Cherubs

                                                                                      Amanda Bracher
                           Sarah Violet Collins

      Logan Bodin                                       Emma Watkins

                                                                                            Elijah Harkins Galli

            Braden Holt

                                     Jacob Hall

                                                             John Clinton Hollingsworth

      Bailey Viset

                                                                                              Jessica Tunnel

                                    Grayton Creekbaum

        Drake Michel                                       Tinaya Jean Stuart

The Silver Lining Newsletter                                              V o l um e XI II, Is s u e 2 , 2 0 0 8, P a ge 2 6
     CHERUBS — The Association of Congenital Diap hragmatic Hernia Research, Awareness and Supp ort

                                                   Faith Grace Miles
                                                                                                 Carly Cribben Byrne
     Brady Douglas Good

                                                             Cadence Skylar Gleeson
                                                                                                          Adrian Rivera

                              Serena Grace Brent

       Natlie Whittle
                                                                           Devarajan Naidu

                                          Landon Tyler Boothe

                                                                                                        Laila Carrero

   Michael William Micallef

                                                                       Toni Ann Jacob
                                      Jackson Durst

The Silver Lining Newsletter                                                          V o l um e XI II, Is s u e 2 , 2 0 0 8, P a ge 2 7
CHERUBS — The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

             3650 Rogers Rd, #290
             Wake Forest, NC 27587

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