I don't think there is enough space or time to explain how DMD has effected our family. Our son Daniel was diagnosed in 2000 when he was 6 years old. We were devastated, especially since there was no family history of the disease. He died 3 years, 6 months and 14 days ago today. That day is etched into my memory just as the day that he was born is. We had a total of 16 years with my darling boy before he passed away.
Daniel was very creative. He loved to draw, play video games and play with legos and hotwheels. Watching him slowly get weaker and weaker, taking away his ability to draw or do anything he loved to do, was awful. I would have done/given anything for him to be able to live a normal life, a normal amount of time. Kids should not die at 16! The worst part is there is nothing that CAN be done at this point to stop this disease. I hope in the near future something will be done, not just to slow the progression of this disease but to cure it. Because no parent should have to go through what we all have/are going through with our boys.