My Introduction

[Guest guest]

My name is Janet, I am 34. My 13 year old daughter has CMT. We found out

about it about 4 years ago. We first thought it was nothing and she would

out grow it. Then when it started to get worse and she fell a lot more we

took her to the doctor. That is where it all started.

No one could answer our questions, and there have not been a lot of support.

The school she is in has a hard time understanding what she is going

through. We live in a small town and there is not a lot of help here. We

take her to the Shriner's Hospital in SC. It is about 5-6 hours away. So

it's not like if something changes or there is a problem, I can just jump in

the car and drive down the street. She has fallen and broke several bones

over the past 3 years. It has really progressed fast.

She has had a lot of depression and anger that goes with this. I would love

to get her in touch with some girls her age that have the same thing. I

think this would help her a lot. It would give her someone that

understands. She has started a project to help children that are sick and in

the hospitals. It's called Dolls for the K.I.D.S KIDS stands for Kids with

Illness, Diseases and Severe burns. (If anyone wants more information about

this, please feel free to email me.)

She is getting ready to have to have a back operation due to her spine

curving so bad. It almost looks like a S. She has a lot of pain with this

in her back and chest. They are going to put rods in her back. She falls

daily and runs into walls all the time.

I have seen in some post about vitamins helping. Can someone tell me what to

get and how it helps. I look forward to getting to know all of you. I am

so thankful to have found support groups for CMT. I have felt so alone in

this.

Thank you,

Janet