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saw your posts on PPMD. i can really relate to what you are going through. my son is almost 7 and was diagnosed with DMD 3 years ago. i was in denial for a very long time and it still hasn't sunk in fully. i stopped reading about DMD, avoiding and cutting short every conversation about my son. i have seen some people not calling me any more and some just calling me out of pity. it was just too much to take. i totally understand how you must be feeling tackling those annoying questions. you can talk to me anytime you like. and yes, some days are good and some are bad and some even worse. but i am a firm believer in God. HE won't let this ugly disease take over our happiness.
i look forward to your reply.
Yes Arun is doing ok.He stopped walking this April-he was 81/2.He has a power chair now and he loves it,he adjusted much better than we did.He recently started deflazacort and goes for aquatherapy 1x week.I also have a 12yr old daughter,Simran and a 6yr old son Aman(no dmd).
Keep in touch
I live in so. cal and read your post about giving your son idebenone already. Would you mind my asking how/where you get it from? I would like to get some for my son who is 11.
My son Ryan got diagnosed in October 2008. It is hard trying to cope with it. He will turn 7 this Year. Your kids are beautiful. I am from Delhi and live in Los Angeles. Wanted to know if you are coming for the conference in Atlanta this summer, so we could meet.
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