Stephanie - posted on 08/17/2010 ( 5 moms have responded )
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My two year old son was just recently diagnosed with CMT. We do not yet know which type he has because I can't afford the genetic testing, but we are looking into payment options. Anyway, I'm just looking for some other moms dealing with the same situation. Anyone out there?
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Siobhan - posted on 09/10/2012
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Hi, i know im a few years late on this post! My 2 year old daughter also has CMT (type 1A). As do i, but with myself it wasn't much of an issue until my teenage years which is common with most CMT sufferers. But my daughter has shown signs of it from a baby and was diagnosed just before she was 2. She sees physio and podiatry but still suffers :( Doesn't seem to be doing a great amount of help at the minute. How are you finding it a few years on? Did you find out which type your son has?
Brenda J. C. - posted on 10/12/2010
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See your local Muscular Dystrophy Association. They research & treat CMT with little or no cost. I do believe you need a doctors referral to be seen though.
Lisa - posted on 10/12/2010
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Hi Stephanie, My son was diagnosed last year with DMD, and the news that your child has muscular dystrophy is devastating. It's the waiting for results so you can properly deal with the situation that is hard. We had a wait for my second son to see if he had it but luckily he was clear. We are however going through it all again with my daughter for a totally different genetic disorder, It's a confusing time and I hope soon you are able to find out the information you need.
Tamara - posted on 10/06/2010
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My son is 5 and has Beckers Muscular Dystrophy. And my 1 year old just got tested, no results yet. If you need anything let me know!
Allyson - posted on 10/06/2010
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Hi Stephany, I have a 10 yr old son with Duchenne Muscular Dystrophy. He was diagnosed when he was 5. I understand how confused you must be right now and not knowing what type must be very frustrating. Hang in there. My son attends a clinic in Brisbane for his check ups and we get fantastic support through there as well. Hope you get an answer and some support soon. I am only too happy to chat if you like. xxx
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