Exactly 20 years ago today on November 7, 1993, we received our only child and son, Matthew's diagnosis of Duchenne Muscular Dystrophy. I cannot describe how our hearts ached except to say that is felt like a huge hole in our hearts. Our son was almost 5 yrs. old and we felt like he had or part of him had died. All of our hopes and dreams for his life were torn apart.
We've lived with a dark cloud following over us for 20 years, not knowing when he would take his last steps, if he would be able to drive because of his love of cars, him attending a prom, going on a first date, and the list goes on and on. All of these things have been taken away from him along with losing friends, his independence, and the normal life he should be able to live. He has to depend on myself and his father for everything from toileting, dressing, and being put in and out of the bed. So much of his life has been taken away by the disease. He's been wheelchair bound for about 9 years. We haven't been on a vacation in about 8 years, because he's so uncomfortable in a regular bed that he can't sleep. Our lives have been drastically altered. And at a time when Matthew should be in the prime of his life, he watches his friends get married and have children of their own. He doesn't look forward to birthdays anymore, because he knows what his future holds and it only becomes worse for him. His heart is affected and he takes medication to keep it as strong as possible, but your heart is a muscule to and its continuing to weaken. We are afraid of heart failure and what the future holds for Matthew. He has some palpatations and shortness of breathe He gets so nervous and scared that he can't go to sleep. He's afraid he won't wake up the next morning. We try to do as much for him as we can going places to get him out of the house. But since he's in a powerchair now our families homes aren't accessible. We're trying to figure out how to get him in my sister's home for Thanksgiving.
It's hard to believe that in 20 years, there's still no treatment or cure. If it doesn't come soon, it will be to late for Matthew. We can't imagine life without him. Please help. Help there be a treatment and a cure very, very soon.
-Mitzi Meador, Union, South Carolina