New Introduction

[Guest guest]

Hi. My name is and I am so glad to find a support group for

CMT.

My Daughter was diagnosed with CMT at age 12, after many years of

fighting with drs to find out what the problem was. She is now 21

and expecting her 2nd child. CMT has progressed so fast with her

that she is talking about not being able to take care of the new

baby when the time comes.

She has had 4 surgeries, 2 on each foot, which have not helped her at all. Now

she cannot open her hands completely.

I have been there every step of the way with her but I no longer know how to

convince her that she CAN take care of both children and herself. I am so afraid

that she will give up and let the baby's father take the baby when it is born.

She is moving in with me in 2 weeks until she can find a place closer to me. Her

18 year old brother is going to move with her to help her also. She has never

lived by herself, I think out of fear of not being able to do something because

of CMT.

If anyone has any suggestions I would love to hear them. I do not want her to do

something she will regret later in life. I also want her younger siblings to see

that you can survive and manage with this and you cannot let it manage you. Yes

it seems that they also have it.

Her sister has all the exact same syptoms as she had at the same age and her

brother has some of the symptoms. They are now 10 years old. I am waiting to get

through the red tape to get them tested. Unfortunately, most drs have never

heard of CMT, and they do not seem to want to learn.

My daughter has been seeing a dr at Hopkins In Baltimore but because of

insurance, I cannot get the other 2 in to see the same dr.

Thanks