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New York, NY Parade
On Facebook - http://www.facebook.com/events/247637065369030/
Register on Eventbrite - http://cdhawarenessday-2013nyc.eventbrite.com/
Set up your own Team Member page on Firstgiving - https://www.firstgiving.com/10125/cdhawarenessday2013
50% of money raised will be donated to DHREAMS for CDH
Contact Noel Williams or Tara Zoitos with any questions about this event
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.
Noel and Tara, look forward to seeing the pictures!!
Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
email: tmeats@cherubs-cdh.org
Many thanks to all who have worked so very hard to get this event set up. I wish you all a wonderful day. Can't wait to hear how your speical event day turned out.
Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla (, Chloe ( 6 ) & Elodie ( 3 )
I am so excited to be hosting this event along with my co-rep Tara! Partnering with the amazing doctors and geneticists at DHREAMS is so near and dear to me. Aidan was one of the first babies to participate in this research study, and he was also born, and passed away, at Columbia Presbyterian. I can't wait to meet all the local families who will be joining us on April 19! Please feel free to contact me with any questions. My email is nwilliams@cherubs-CDH.org
I currently volunteer for Cherubs as New York Co-State Representative as well as for the Grant Committee. My Cherub, Aidan was diagnosed with severe LCDH during my 20 week ultrasound. By the time I had my last sonogram prior to delivery, his stomach, spleen, liver and parts of his small and large intestine were inside his chest cavity, leaving very little room for his lungs to grow. Aidan was born at Morgan Stanley Children's Hospital at NY Columbia Presbyterian on June 6, 2006. The morning after he was born, the doctors placed him on ECMO. On day 5 he had his hernia repair which went very well according to the doctors, they successfully moved all of his organs back where they belonged and patched the hernia. On day 10, the doctors felt that leaving him on ECMO any longer would not be safe and they removed it from him. Aidan fought and struggled for the next two days and earned his angel wings on June 18, 2006, Father's Day. My husband and I currently have a 4 year old little boy, Gavin. He thankfully was born healthy and without CDH. I've always felt that he was our gift from Aidan, a beacon of light in a very sad time in our lives, and I am thankful for him every single day.
I know you will have a great day.
Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla (
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