BENEFITING: Charities Aid Foundation America
Damon was born with a very rare chromisome deletion named Kleefstra Syndtome this means many things to our family. First a wonderful, handsome , happy son-DAMON. Second countless hospital stays and Dr visits: including open heart surgery, tracheostomy, GTube, infusaports, and many others. He requires nursing care Almost 24/7 with feedings and medications to control seizures and maintain a healthy lungs destroyed by chronic lung disease around the clock. He uses hearing aids, glasses, DAFOs and a wheelchair on a daily basis A geneticist walked into his hospital room and said she had an explanation for the developmental delay, seizures, respiratory issues, severe GI problems, behavior, low muscle tone, and even that cute little cherub face with the tiny button nose: Kleefstra Syndrome Damon was the 30th person diagnosed in the world in 2004. We were left with many unknowns and told not to expect much developmentally from him. By age 5 he walked using a walker, talked & signed 30 words ate my mouth all nutrition and seemed fairly "normal". Then a fever of 106.3 caused a grand mal seizure that lasted over 1 1/2 hours long. Damon was said to be comatose , brain dead where a 1/4 in circumfernce of brain matter was fried and destroyed and we were to have end of life discussions. The next day he tracked mom across the room twice and off to rehab we went as a 6 year old new born status. This is Damon's Way he lives to prove doctors wrong and make them think outside the box. A regression like this is common in our Kleefstra Kousins but usually it starts during puberty ...which is where we are headed soon as a 12 year old. GeneSpark.org is doing cutting edge research to stop regressions, reverse learning delays and aid in behaviors that many Kleefsta Kousins suffer from. Please support this research with what ever you can by donating and joining our Walk n Roll Team.