Wednesday, July 13, 2011

Daily CDH Vote Reminder - Meet Cherub Flynn Leigh-Baker

Please Vote Today - This is your daily vote reminder to help babies born with Congenital Diaphragmatic Hernia!

CHERUBS is participating the Vivint Gives Back Contest on Facebook and we need your votes!    How to vote:

1. Go to http://www.facebook.com/VivintHome and "Like" Vivint

2. Go to http://www.voteforcdh.org/ and click the Vote button

3. Log in through Facebook and Vote!

4. Repeat #2 and #3 daily through August 27, 2011


Contest Update - CHERUBS is thrilled to have actor Charlie Sheen now on board to help us with votes!  He's pledged to get his 4,000,000 to give us at least 25,000 votes on Twitter.   The CDH Awareness alone with this is astronomical!  http://www.twitter.com/charliesheen

Contest Voter Tip Of The Day -  Tweet with Charlie and gather votes for the babies!  Share your stories and photos!

More Contest Info - visit http://www.voteforcherubs.org/ for information on how you can win prizes in our voter raffle, the contest video, free graphics, learn where the money would go to help CDH babies and more.

Did You Know? - CDH is not rare.  It happens as often as Cystic Fibrosis and Spina Bifida.  1600 families are struck by CDH each year in the United States.  Do you know the cause?  No one does.  Yet.


Meet Our Cherubs!  - This is Flynn Leigh-Baker. CHERUBS may have helped save his life. When we went to our 20-week ultrasound we went in with the expectation of hearing "boy" or "girl" not "his heart looks pushed over we're sending you for an MRI." We were shocked once we learned the diagnosis of CDH. We had never heard of it and we already had a healthy 2 year old daughter so we just assumed we would have a healthy baby. Not only did our baby have CDH but it was a right-sided one which is rarer and it was also very severe. Our initial doctor pointed us in the direction of the balloon tracheal occlusion procedure being done in San Francisco but I had already done some research of my own. I had found the CHERUBS website and a link on their page learned of a new procedure being tried in St.Louis that used a gel instead of a balloon to block the trachea and improve lung growth. This idea seemed better since it was far closer, there wouldn't have to be another fetal surgery to remove the balloon, and I could drive the 6 hour drive to go meet with the wonderful people of the Fetal Care Institute. We went into the fetal surgery knowing there weren't many options for us but hoping that some lung growth would give Flynn the edge in the battle with CDH. The gel procedure worked wonderfully and Flynn came out without needing ECMO. He had his CDH surgery 8 days after he was born and came through with a big gortex patch but stable. He has had the usual feeding problems and reflux that seem to go hand in hand with CDH and eventually needed a g-tube to help us get him the milk he needs to grow. But happily after a 7 week stay in the NICU we were able to bring our miracle home.So far Flynn is the first and only survivor of CDH having done the gel occlusion. I can only hope that the future holds more survivors and with research we can steadily decrease the mortality rate of CDH from 50% to 30% to 10% to 0!

- written by Flynn's mom, Bonnie Leigh


Thank you all for your support and your votes to help CDH babies!

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Vote for CHERUBS at http://www.voteforcdh.org


Contest Info, Fliers, Graphics, etc at http://www.voteforcherubs.org/



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Feel free to forward this to family and friends!

Submit your cherub to be featured by e-mailing his/her name, photo, date(s) and a short paragraph to membership@cdhsupport.org.  By submitting, you give CHERUBS permission to use this data on our site, blogs, newsletters, videos, etc to raise CDH Awareness.


CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support

Public 501(c)III non-profit organization serving over 3000 CDH families in 38 countries.  Searching for the cause, prevention and best treatments of CDH since 1995.

http://www.cdhsupport.org/

http://www.cdhresearch.org/
http://cdhsupport.blogspot.com/
http://www.cdhconference.org/

Phone - 919-610-0129          E-mail - info@cdhsupport.org

Mailing Address - 3650 Rogers Rd #290, Wake Forest, NC 27587, USA

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