Posted on September 14, 2009 at 2:45pm
My 17 year old Alex in Florida is bowling on the High School bowling team. He also bowls on the Quad Squad twice per month. The engineer who designed the IKAN bowler is there every other saturday when Alex bowls. Check out this device available to all wheelchair users. It is one of the best things you can do for your family member confined to a wheelchair. It gives them independence to actually participate in a sport.
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I so sorry to hear about your son. I can't even imagine how you feel. Know that he is at peace. My husband is a firefighter for Lake County Fire Rescue. That is how he heard about your son and then told me about it. We haven't found any families that live near to talk to about this disease. Our son was diagnosed Sept. 08. He was only 18 months old. He will be 3 March 7 and I am having another boy April 1.
Needless to say, we had never even heard about DMD until Skyler was diagnosed. I couldn't believe what we were being told because all I read was it was a genetic disorder that affected boys who had it in their family. That is not Skyler's case. It is not in our family and I was tested and I am not a carrier, so we have had a hard time believing. He has a nonsense point mutation.
I would love to talk to you if you are up to it. Just let me know. Take care.