Dystonia Bulletin Board

I haven't had children yet, but knowing would help me prepare. I would love to have children and I understand your position. You have already had a child. If you find out you have DYT1 and decide not to have more children, at least you already have a 16 year old daughter.

I would consider adoption, but how do I know that child's genes are any better than my own possible child's genes? While I am staunchly pro-life and choosing not to have a child or more children based on genetic testing is not by any means a form of abortion, it still means there is life that might be here if we didn't keep playing God and getting so advanced with medicine and technology as to "choose" life.

I hope I would be able to accept, love, and support my child no matter what. I just don't know what I would decide.

Personally, dystonia is a small part of my life and I don't intend to let it dictate my life or my decisions. I hope you find the answers you are looking for, but please consider how you will feel, if you find out you have DYT1, and be prepared to mourn the loss of what could have been. My children aren't even here yet, but I still pray for them, and I can't wait for them to come into my life.

I thought maybe the genetic testing helps with DBS, as usually people have genetic testing before they do it. In your case, it seems like more than surgery is riding on the results of this test. I hope it goes well for you.

Still praying!

Be blessed and be beautiful!

Love,