My son had duplication at exons 2-8. He quit walking at age 8. And passed away quite suddenly with respiratory distress at age 17. We had no warning of poor lung function prior.

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KATHY HOW VERY SAD FOR YOU.I JUST PRAY THEY FIND A CURE so others do not have to face life without their beloved sons Im not really smart about the duplications very new to this site but have learned so much. I would like to know more about your son if you want to talk about him.My Caleb is 10 and everything is falling apart for him.  where do you live?  Im in Ca. hope to hear from you.  Penny
Kathy - so sorry to hear about your son.  I know you miss him beyond words. Was he on steroids?  Any cough assist or breathing apparatus?  How long ago did he pass away?  Again, I am so sorry.  I don't know how one lives with the grief.  Char


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