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Daylen

Daylen is a five year old little ball of energy that started his journey on this earth January 31, 2011 at the Jenning's American Legion hospital. He was born with a rare genetic disorder known as caudal regression syndrome/sacral agenesis. This means that the lower part of the spine did not develop like it was supposed to. CRS/SA affects approximately 1 in 25,000 births. It is a cousin to spinal bifida. Caudal Regression Syndrome can be mild to only affecting the lower extremities to having major affects on vital organs such as the heart and lungs. Daylenís syndrome affects the lower part of his body starting at l3-4. He has no sacral area and has whatís known as pseudo hips, so his legs attach to little bones where the hips are supposed to attach to the sacral area. Some of the kids are born with round legs that look like macaroni and some are born with straight legs. Daylen was born with straight legs however much smaller than a normal child. This being said he has never let anything stop him. He met his milestones just a few months later than most children, sitting up around 9 months of age. He was unable to crawl on all fours however he did army crawl for a bit until he learned to move very quickly by scooting on his butt. This is still how he gets around the house. He can stand for a few minutes and can take steps while holding on to furniture. This past year he received his first wheel chair and it took him about 2 minutes to figure out how to work it.

Daylenís disability only affects his physical being. Daylen started out in daycare and was in the hospital 3-4 times a year with RSV and asthma. We moved to Sulphur when he was about 1 1/2 years old and stays with his great grandmother who goes by the name of Nanny while his parents work. Nanny and Daylen have a special bond and he has met and exceeded his cognitive goals by leaps and bounds because of the time and energy that Nanny has devoted to him. Daylen was counting and knew the alphabet by age 2. He has also been reading books since age 4. Daylen will have to undergo a few surgeries to make life a little easier for him in the next year however he has never been treated as a special needs child by his family and we fully expect great things from him.



Daylen at Disney World




Give A Wish, Inc.
P.O.Box 778
Kinder, LA 70648
337-794-5903
txlagiveawish@aol.com
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