What would you like to know?
I don't know how much I can add to your research.
My son is 4 years old, and was diagnosed this past August. I do not feel he is in a very advanced stage, as we are still seeing improvements in his motor skills. He has always been behind in his gross and fine motor skills. He crawled after one year of age and walked at about one and a half. He has always had trouble running, riding a bike, and going up the stairs one leg at a time. His PT through the school district figured out it was probably DMD- so the PT is very important! At this point, it affects us very little. He sometimes feels sad because he can not keep up with other kids at school and home. We do heel chord and hamstring stretches twice a day, he takes some supplements at breakfast and dinner, and he has night splints that he sleeps with to keep his heel chord stretched. He will start on the steroid deflazacort soon. He does not really know that he has DMD, just that the doctors are trying to help his muscles work better. It affects us, his parents, mostly emotionally at this point, knowing what is to come. But we try to take life day by day, and not dwell on the future too much. Since we are new to this, I don't think we go through the regimens lots of familes go through every day. So hopefully you will get some other replies for your studies. Good luck, I think Colin's PT is absolutely vital to him and us dealing with this condition. I would be happy to answer any other questions you have.