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Re: welcome /and son

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Hi ,

I have CMT and so do 3 of my 5 children.

I have a 14 yr old boy with CMT, a 13 yr old daughter, and a 17 yr old son with

it. Your son is not alone :) I wish our CMT kids could get together for support

one day. I always felt so alone as a kid with CMT.

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Hi ...

I have a 6 year old son with CMT 1A who is also a toe walker, couldn't jump and

runs slowly. He now wears AFOs. He has the start of torso weakness and his

writing hand is changing quickly. We hope to have a laptop for him at school

soon.

He is the first in our family to have it so we are challenged to

understand what he is going through. I think it helps him to know that there

are others out there with it, even if he can't meet them easily.

He's still too young to really understand it all, but does sometimes

express a general anxiety. We try to help him by talking through it,

but are still sometimes at a loss to known when things are related and when not.

(We have recently let him know that his predilection to forget to do something

in favour of playing has no relation to CMT!).

Best of luck, you've found a great group here

Sally

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