Imagine having a healthy child. You watch them develop slow. You take your child to doctor or several doctors and have test after test. The tests come back your child dx with duchenne md. You carry on trying to put the fear of one day losing your child to this disease locked in the back of your mind.(you love this child while you can) As years go on you will watch this child try to run when they can only walk fast. One day they can no longer get up off the floor by their selves. Awhile passes they struggle walking eventually enter using wheelchair for long distances so they can conserve energy... then becoming a permanent resident of a wheelchair. Eventually duchenne puts an all assult on every muscle in their bodies..all the while you watch life and time begin to fade.
Our two boys are eight and eighteen have duchenne md. We are a rare family their sister is 24 and has duchenne md. But Duchenne md can be traced back further forty years in my family. I had a uncle and cousin both had dmd. I understand you want drugs safe..But how long does it have to take? Childern..young adults have been dying on and on throughout the years. As long as a medicine is proved not a poison and benefits the child why for the Love Of God does fda require ten years to approve something.
Please Step Up and Do something.The Childern are still fighting an almost hopeless war, more childern are dying.. Time is a precious to them.How many more do we have to bury? You could make the differance by at least getting something to market to improve their quality of life and in the long run saving them from a premature death.....Thank You...