My Introduction

[Guest guest]

Dear ,

I was diagnosed with CMT when I was 3 years old. I am now 45. Even though I

have broken many bones, been the subject of teasing by kids when I was in

grade school, was not physically able to persue the careers of my choice, I

do believe my mother suffered more than I ever did. I was just a kid and

thought that my life was very normal. My mom knew different and her heart

broke everytime my CMT presented its many challenges. But as for me, my

boken bones would heal and my spirit would grow stronger. I played hard and

was very happy at times (I did suffer a bout of depression in my teens and

early 20's). I still feel very challenged by my CMT and it agrivates me very

much that I still can not do things that I have a very strong desire to do -

like go skating and skiing and running and maybe just once finishing better

than last place in any athletic event. But I also know that my CMT has

shaped they type of person I am. My friends and business associates often

comment how caring and compassionate I am for others. I don't think I would

be that way if I did not have to face the many stuggles I have had. I'm sure

that you will feel pain as you watch Anderw grow and struggle but my advice

to you is not to coddel him but allow him to be a kid, allow him to get hurt

and pick himself up again, allow him to stuggle and find his way. When he

askes why he is the way he is tell him that you do not know but you would

not love him any more if he were any different.

Good luck and God bless

Jeff

[Guest guest]

In a message dated 9/14/2005 11:08:53 A.M. Pacific Daylight Time,

meks61@... writes:

I am hoping will not only offer research updates but support from

others parents with a similar experience or someone with very early childhood

onset such as 's.

Thanks

's mom,

Hi , Welcome to the list .

Your son symptoms are very much the same as my son Adam.

I have CMT and so do 3 of my 5 children so I assume Adam has type 1A.

Its nice to meet other parents of CMT kids.

[Guest guest]

Hi everyone ! I am a mother of three beautiful little girls.My 5yr old was

recently dx with CMT. I am constantly searching for information for the many

unanswered questions that I have.I am hoping maybe someone can help.My daughter

just started kindergartion( 2-1/2hrs in am)when she gets home she has extreme

leg weakness and at times cannot even walk.She cries and lays on the ground then

after a short period of rest can walk around again.We talk about this and what i

was able to figure out is that she pushes herself so hard at school by the time

she gets home her legs are extremely weak. she also is taking 2-3 hr naps

daily.She will not wear here mafo's because they also make her legs extremely

tired and fatigued when ever she wears them.She's had the mafo's for one year

now and has always complained of this since day one. I thought it was because

she was using muscles she normally didnt use.The best part of it all is that the

school district states she does not qualify for

services(pt/ot).Also in the past 2 months she has c/o rt hip pain, the first

time she was unable to bear weight for the first 12hrs but then gradually felt

better by the third day . Two weeks later c/o intermittent rt hip pain for

oneday and 2 other times after that .X-ray came back negative, showing no hip

abnormalties.Today she was pushing a chair in and yelped i broke my hip but the

pain was gone in a couple of minutes.Has anyone expierenced intermittent hip

pain ? any advice or suggestions are welcomed.Thanks!

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