Honey, I am a pediatric nurse and have taken care of hundreds of children, you are correct it is very rare. I happened to get a new job with a 16yo boy who has this disease. I have been with him 5 years and he will be 22 next month! He happens to be in the books because he was the first case where the disease affected his heart muscle as well. At 21 he has had 3 major heart attacks! I can tell you there are some very promising studies out at this time for newly diagnosed patients. I will get these to you if you would like. Love and prayers to all DMD patients.