Introduction of my daughter

[Guest guest]

Dear all,

I have spoken with a few of you already but let me introduce myself to you

and my daughter. My beloved daughter was diagnosed with either CMT 2

or Kugelberg-Wielander at age 8. It appears that she has CMT which we are

happier about than the other. She has and is still learning to adapt. She has

some amazing people in her life who love her for who she is, not the way she

walks, or sits, or the way her hands look. Yes, she has had her fair share of

ridicule but like every other adversity, she seems to rise above it.

She is now 13, that wonderful age of self reproach and self-doubt. When she

tells me she hates what has happened to her and who she is, I tell her how

much she is loved and that she has a purpose on this earth; she will need to

find it. She wants to be a child psychologist.

Her 17 yo brother used to be embarrassed by her. He is now prepared to punch

anybody that gives her a hard time next year when she goes to his high

school. That is a great step for him too.

But more than anything, as I read all the notes from you all, I realize that

you all too get tired easily and that reminds us not to expect too much from

her. I think she pushes herself to hard.

She has been experiencing electrical shock-type pains in her feet and hands

lately. I in my hopes, was thinking it might be nerve regeneration. It sounds

like this is a common complaint among CMT people. Any advice? We have not

seen the DR recently.

WE live in the great rainy Pacific Nothwest. I am waiting for some SUNSHINE!

Thanks for listening

a