CS Type 1
Jonah weighed 8lbs 11oz when he was born. He was 20 ¾ inches long. We started to notice problems with Jonah when his cruising from furniture to furniture never really progressed into walking. We began the process of testing and Dr’s visits from the age of 18 months until being diagnosed in 2006 with Cockayne Syndrome…finally an answer!!!
Jonah is the embodiment of happy-go-lucky!!! Everyone he meets loves him. He is very mischievous and loves to laugh. Jonah has always been very healthy and has only suffered from a mild cold to the stomach flu. His only true consistent ailment is asthma.
We are from Canada and yes, he is the biggest hockey fan!! Jonah plays sledge hockey, which is hockey for the disabled. This sport has made Jonah so strong. His determination and drive to succeed in hockey is what he lives for. He wants to play on the Canadian Paralympic team one day.
We are so proud of Jonah. When he wants to do something he doesn’t see his disabilities, he just wants to do it. The challenge is finding a sport that he can participate and feel good in. So far Jonah has taken therapeutic horseback riding, swimming lessons, Yoga, house leagues at school and lives and breathes hockey. He is interested in taking karate but we have yet to find a place suitable for him.
Jonah has many good friends who love and accept him as he is! He is always on the prowl for a new girlfriend and usually has a new one by the end of the day!