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Thread: CDH Awareness Road Rally - April 24, 2010 in Spartanburg, SC

  1. #1

    CDH Awareness Road Rally - April 24, 2010 in Spartanburg, SC

    CDH Awareness Road Rally - April 24, 2010 in Spartanburg, SC

    From a CDH survivor:

    My name is Robert Cook, I am a senior at Oakbrook Preparatory School in Spartanburg, South Carolina and a CDH survivor. I have been planning a road rally to raise awareness for CDH.

    Name: CDH Awareness Road Rally
    E-Mail for Event: CDHRallySpartanburg@gmail.com
    Location/Date of Event: Oakbrook Preparatory School Spartanburg, SC- April 24, 2010
    Beneficiary of Event: CHERUBS organization (awareness raised about organization and condition)
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  2. #2
    OMG! I have to be there!
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  3. #3
    That would be great, Lynne!!! Please take some photos of Robert and Baer!
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  4. #4
    I am going to try to be there. That day is prom and I am the After Prom organizer so I want to come by even if I can't be in the event. I am hoping Eden and some of her college friends can. She goes to Spartanburg Methodist College. On another note, Is there still a CHerubs scholarship for sibs? Salem is looking around for money (as everyone is) and we cannot find the info on the website.
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  5. #5
    Eden and her friend are doing the rally and I will be there. Eden is hanging posters at her college in town there. SO EXCITED! I can't wait the meet Robert.
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  6. #6
    Sounds fun Lynne!
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url

  7. #7
    Here are some photo's from the rally.

    Baer and Robert

    Eden, Baer and her friend Ryan

    The three CDH survivors at the Rally

    And I am sneaking in one of Salem's prom pics!
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  8. #8
    Love the pictures Lynne! Looks like everyone had fun!
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url

  9. #9
    Awesome Pics!!
    Shana ~ Mom to Nyah-Lyn (05-31-2004) and Cherub Landon Matthew (06-20-200 Bilateral Diaphragmatic Eventration. Left side repaired @ 3 days old- Right side repaired @ 4 months old --> total hospital days = 42. He's our hero! http://i45.photobucket.com/albums/f8...bonSmall-3.jpg Landon's Journey: http://www.onetruemedia.com/shared?p...m_medium=email

  10. #10
    That is so cool!
    Mom to Dakota Tenney- born 12-25-08 (RCDH). Diagnosed at 29 weeks. Born 7 weeks and 2 days early (32 weeks and 5 days). She is my Christmas gift and I am never giving her back. ECMO three days. Surgery on Day 13. Home on cannula oxygen 2-25-2009. Off oxygen 3-31-2009. No feeding tube yet *knock on wood*. Hard to feed and still a skinny little girl- but we are working on it!

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