My son Seth is almost 14 living with DMD. Everyday my heart aches watching my son loose abilities he once had. Watching him try to do things that should be easy yet for him are huge tasks that purely exhaust him. Unless you are up close to one of the children dealing with this you cannot imagine what it is like. Seth used to run and play almost the same as a healthy child then it got harder and harder and he got into a wheelchair full time by 11 years old. Myself, my husband, and our other children have to shower Seth, dress him, help him use the bathroom.
He is now loosing strength rapidly in his upper body we poor his drinks have to help lift certain items. He can no longer lift the glove to play catch with his brother he chooses to eat with his fingers because lift the spoon or fork is to heavy for him. His heart function has started to be impacted by DMD. Let me remind you my son is almost 14!! He is strong, brave, and will never ever complain. He is my hero my strength my everything. Anything that we can give Seth that could help why not.
My son has DMD it is fatal he will die because of this disease. Every moment I remember the doctor saying 17-21 year you will have your son. We are almost there. To me there is not a risk only a potential reward. What is the hold up there should not even be a moment for thought on this. Please I beg of you to think of your children and what you would do if this was your child you would move mountains to get them anything that could help them no matter if it was giving them strength for one more day week or year!
Allow my son and all the other children the opportunity the chance for maybe that extra day approve this drug!