Pregnancy/Heredity Question

October 14, 2005

I didn't know that I had CMT when I had my children. I didn't start

exhibiting really noticable signs until I was about 30. My oldest

son, who is 22, has CMT. He started experiencing drop foot and

weakness when he was 17. Watching my child deal with this disease

is by far the hardest thing I've ever had to do.

But would I have decided to not have children had I known I had CMT and could

pass it on? I would like to say yes, I would have had kids no matter what. But

that wouldn't be a very honest answer.

As a young person with no experience in this arena, I might have opted out -

chosen to lead a different kind of life. I am so thankful I didn't have to make

that decision. We don't really know if Luke will end up with a more severe case

than I have or if he's just progressed quicker and will stay at this point.

About a year ago, I started working for the Arkansas Independent Living Council,

this is a council which is comprised of 51% of persons with disabilities.

Working here has really put CMT into prospective for me. Believe me, there are

people out there with alot worse situations who have accepted their life and are

living it to the fullest extent.

The biggest thing I have learned is that disability is a natural part of life.

Most of us will experience some type of disability in our lifetime. If we're

lucky, it won't happen until we're elderly. But regardless, the most important

thing we can do is not let our disability define who we are as a person.

We are not disabled - we are persons with a disability. Having children is a

risk regardless of what you do or do not know ahead of time. My boss has a son

with severe cerebral palsy. And she's thankful everyday that came into her

life. Se loves him just as much as her younger son and is every bit as proud of

his accomplishments.

To me, you either want to have children or you don't. And both decisions are

perfectly natural. Just do what is in your heart and you will be fine. I'm sure

your husband's parents don't regret having him. Anyway, Good Luck in your

decisions.

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