A note to Saras Parents: I finally do not feel alone. Every word of your concern is also mine. I love my 2year old daughter with all my heart. It took some time to rid myself of the guilt of "giving" my child this disease. I then realized that I had no control of my daughter getting this disease, that my husband and I carried this gene. I have agonized over having another child. Now I am aware of the odds. If I make the desision to have another child and the child is to be affected by this gene, I don't know if I could live with myself. Then if I don't have another child I feel like I am going to be loosing out on all that love. Which leaves me feeling selfish. Thank You for letting me feel like I am not alone.