Re: feeling guilt/Type 1 or 2 or X

[Guest guest]

I am with you Gretchen I feel no guilt...I have CMT 1A

In Ok

[Guest guest]

Hello all, I don't post often, but felt I would give my

experience on this matter since you asked. I wasn't Dx'd

until almost 5 years ago. I have 2 children, both boys. My

oldest son also has CMT, my youngest son so far shows little

to no signs and has not been tested. Having my own children

was very important to me as I was adopted. The way I see it,

my children are nothing short of a miracle, they are here

because it was meant for them to be born.

I do not feel guilt for passing CMT on to my oldest son,

although there are times I feel bad for him, and I do worry

alot about him. He showed more signs than I did at an earlier

age because he was a toe walker and wore braces and AFOs

since he was a year old. It took 3 years of PT and wearing

the boot braces to get his foot flat enough while holding it

down to take a mold for AFOs. He is now 15 and has not worn

the AFOs since he was almost 6. He should have been DX'd with

CMT way back then, but he wasn't until I found out I have it.

It was then that we reopened his case through Shrinner's and

he was DX'd. We have Type 1B, which they say is rare. He

should have never came out of the AFOs at that time, but the

Dr. didn't pick up on what was really wrong.

Today he does just fine. He has the normal ankle sprains,

falls, and his knees pop out alot on him, but otherwise, he

is healthy, strong, and has a good attitude. He is extremely

smart, and will do anything to help someone in need. He is

very active in Boy Scouts, and is only 1 rank away from being

an Eagle Scout. I can't imagine life without children

because ever since I can remember, I always wanted to be a

mother, and I wouldn't have had it any other way. Besides

all that, I believe Forest Gump said it best, " Life is like

a box of Chocolates, you never know what you will get " .

Tina

[Guest guest]

I have CMT1A. I didn't know this when I had my daughter, who also

has the disease. Because of the timing, I don't feel guilty about

passing it on to her. That being said, I would feel tremendous guilt

having another child " the old fashion way " . I would feel obligated

to do the preimplantation testing in order to verify that my next one

was CMT free.

My daughter is an angel, but she has suffered more in her 8 years

than I have in my entire life. I just couldn't risk putting another

child in that position.

heather