My son Ben, who is now 27 years old, has Duchenne Muscular Dystrophy. He was diagnosed at age 9 and went into a motorized wheelchair at age 13. We started him on prednisone after diagnosis, took him off because he sustained a 50% compression fracture of L5 from a fall and because of the steroid. He was off steroids for 2 years and then we started them again and he still remains on it, although at a subtherapeutic dose. He requires our full time attention and care and is very frustrated as he loses more and more function, ie. must sometimes be fed by us.
You may recall the story of the young man, aged 21, whose pushbars on his motorized wheelchair became lodged in the grill of the tractor of a semi back in 2007; that is our Benjamin Carpenter. Fortunately for us and him he suffered not ill effects from this incident, other than knowing what it is like to be a celebrity.
We still do not know what his mutation is and were hoping to find out for the sake of his older sister who is now the mother of a beautiful baby girl. Our whole life changed instantly when Ben was diagnosed; we had hoped to be a skiing family, taking freq. vacations and flying by private aircraft and skydiving; alas, Ben can no longer do any of that. Vacations take a lot of planning because he is only comfortable in a hospital bed with an air mattress and fatigues easily. We do our best and try to let him be as independent as possible but it is getting harder and harder for all of us as we, his parents, are now in our 60's.
We continue to hope for a cure to help all the young men like our son.