Introduction and question

[Guest guest]

Hello all,

My son is 11 and was diagnosed with CMT 1A around 2 years ago. He had

gone through heel cord lengthening surgery, then we went to a

neurologist who wanted to know 'why' he needed the surgery in the first place.

We went through an EMG (horrible) and with those results had a blood test. The

CMT comes through my wife's side of the family, but my son seems to have it

worse. He has low muscle tone throughout his body, runs really slow, and

unsteady balance. I was finally able to teach him to ride a 2-wheeler finally,

but he's still afraid of hand brakes.

Through the school system we get physical & occupational therapy and

some modifications in the classroom. We have to be careful with his IEP because

they like to put in phrases to show he's 'getting better' not understanding this

is a degenerative condition that needs constant care.

My question is this this - he like to play baseball, and has been in a league

with younger kids, but is too old for that now. I don't want him in regular

little league, I'm afraid he'll get teased. Does anyone know of any other kind

of baseball league that would be appropriate for us - or an organization to

contact that would have some information? We are in the Boston, Massachusetts

area.

Thanks,

Jim