Introduction and New to CMT

[Guest guest]

Hello everyone.

My 14 month old daughter has recently been diagnosed with CMT 1A. She

was born with low muscle tone and a blood test confirmed my worst

fears. My husband is from Israel and had about 8 different surgeries

on his feet. They never named his problem. He didn't even know he had

CMT until I went online and researched the names of some of his

surgeries. Of course his CMT was only confirmed when my daughter was

6 months. They always told him that what he had was not hereditary! A

fluke they called it!

When I got the results of my daughters test I was 4 months

pregnant...Autosomal Dominant....50/50 chance....I don't want to

remember the thoughts that ran through my mind.

So now that I have pulled myself together, I want to give my daughter

the best possible chance for whatever manifestation occurs. She's been

in PT and OT since she was 4 months old. Started swimming. I give her

my own trial of Vitamin C. I have flown her to Boston to be examined

by a very well respected Neurologist.

Now I want to take her to the best CMT clinic that is in existance today. The

clinic that is at the forefront of the latest in CMT research. The location

does not matter. States, Europe, can anyone make any recc's? Also who is

considered the foremost expert on CMT?

Thank you all for your antisipated responses!

M

[Guest guest]

In a message dated 1/18/2007 10:00:01 A.M. Pacific Standard Time,

bbk529@... writes:

They always told him that what he had was not hereditary! A

fluke they called it!

OH MY GOSH This is exactly what I was told! Word for word!