Re: DIAGNOSIS AT YOUNG AGE (TO KELLY)

January 17, 2002

I have a 2year old that was diagnosed in September. The Doctor at ish Rite

said that she would probably get better once she grew a little more. She is

just getting clumzier. I am sorry to hear that she might have to have surgery

at a young age. They are so active and want to run and play and having surgery

will hender that. However if it is neccessary then Childrens will treat her

right I am sure of that. I just hope that the PT will help her feet so that she

will not have to go through that.

I am as scared as you are that my daughter will be in a wheel chair by the time

she is 10 but the doctor assures me that that will not happen. I am still not

completely convinced since this disease is soooo unpredictable.

If you need to talk you can e-mail me direct.

Kara

----- Original Message -----

From: Benzo

Sent: Thursday, January 17, 2002 9:49 AM

Subject: [] DIAGNOSIS AT YOUNG AGE

Hi all. My girl is 6 and has CMT. Can anyone help me out with this one? Do

you think that since she had such an early onset that her case will progress to

the worst possible level? The doctors at Children's Hospital in Pittsburgh, PA

have said that this is the worst she may ever get. I understand it is an

unknown, but does anyone have advice/experience?

She is currently undergoing physical therapy to try to lengthen her heel cord.

If it doesn't do much good, she is going to have surgery to lengthen both heel

cords. Has anyone ever had surgery to lengthen the heel cord?

Thanks for any input.

Benzo

Wintersville, OH

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