Attention Ontarioans with kids who have CMT

[Guest guest]

Hi everyone,

My name is Rosie and I have just joined this site. It was referred

to me by our friends at The Hereditary Neuropathy website. I was

reading a story on a boy named Gavin (I was told his mom is on this

forum)and was totally in awe.

You see, my son (he will be 4 on Nov.2) was diagnosed with CMT about 1.5

years ago. As far as I know it doesn't run in my family as neither my husband

nor myself have it. In fact we have never heard of this disease before.

We are trying to get as much info on this as I beleive knowledge is power. I

know Dr.'s say it's not cureable but, I think that there is a cure for

everything we just have to find out how.

I don't want my son to gradually get worse over time (we are still waiting for

results for the " type " of CMT he has). I want to do eveything possible to make

my son better.

The reason for this long message is that I want my son to get to know

other children around his age who are dealing with the same thing. I

would love for our children to become friends (as well as

ourselves). We can exchange experiences, ideas, and even do fun

things with our children. I also have another son (who will be

2 in Oct.) who was born healthy.

Does anybody feel the same way I do?

I hope to hear from someone soon. Maybe even Gavin's family

Rosie