The Words of a Duchenne Parent  

I was so excited when I found out I was expecting a baby and going to be a mother for the first time. When I saw him for the first time, I just fell in love with my perfect little baby boy, Ian Michael Schneider. He was such a great baby – he slept, ate, laughed and had the chubbiest cheeks and the brightest eyes.

Three years later, our lives changed forever in a matter of an hour when my husband, Michael, and I were thrown into the world of Duchenne Muscular Dystrophy. We learned Ian will not live a full life and our family will have to watch him suffer as the disease progresses.

I often think, “I did this to Ian.” Not intentionally, I know, but I still passed it to him.

Ian just turned 9 and things are very different for him and the rest of our family. Instead of being fitted for a football uniform, he is being fitted for a motorized scooter. I hate to watch Ian frustrated when he falls down, when he struggles in school with physical and academic issues, when he can’t do anything but be carried on daddy’s shoulders at his cub scout camping weekend, when he has no one but us to play with, when he has to sit in a wheelchair on his class trip because there is walking involved.

My heart breaks when I have to give him a growth stunting steroid every day, when we feel out of place among healthy families or shut out completely because they can’t relate, when we dread the day the words “I can’t walk anymore” will come out of Ian’s lips, when the only thing on my mind is how long will we have our son and when will Duchenne take everything from him and our family?

By Donna Schneider, Phillipsburg, New Jersey