My son has myotonic muscular dystrophy. It is slowly killing him. There is no treatment and no cure. We need research into this utterly devastating condition so that we can find a cure. Most people have never heard of it. That needs to change.
Josh needs saving. He needs to grow up and go to school, college, marry , get into trouble. His precious little hands need to hold a steering wheel one day. It will probably never happen. His reality is a wheelchair, loss of ability to eat,drink,speak and finally breathe. Its so unfair. What did he ever do to deserve it? What did any of the affected kids do?
Nothing is the answer. Absolutely nothing!
I wish so badly that i could change places with him. That he could have my years. But i cant. I can only fight on his behalf. That i can do. Ill do it for as long as it takes. Till this wicked and relentless disease is heard of by everyone. And a cure is discovered. For my beloved little son. For all the kids with congenital myotonic dystrophy. We will not be silent and accept it.
Sarah and josh