Hi Angela, So nice to hear from you. Lucas is my grandson. He started the growth hormone when he was around 9 years old. The doctors seem to think it is working well. He is still short stature. Hasn't developed his male genitals properly for his age. I can't imagine what it would be like if he wasn't on growth hormones. He has a wonderful team of doctors at Cincinnati Children's Hospital. We are praying that he will be enlisted in the Halo study starting in May. He shows frustrations at times over his disability. Although Lucas is a fun loving, out going boy, with lots of friends. Lucas' mother has a stretching process with Lucas everyday. Trying to keep him as mobile as she can. Of course when he is visiting us, we do the stretches also. How often is your stretching schedule? Do you also have a physical therapist? I am a registered nurse. Lucas' mother and I went to Mason, Ohio, and was trained to do the stretches. There are so many questions we all have about our precious boys. But Angela I feel that science is on the edge of getting a treatment. The utrophin study will help all our boys. This would be a great start. Lucas has less than 5% dystrophin, without a shift in his reading frame. A person would have to be a scientist to understand all the different types of DMD. Although Lucas' mother knows more than most of the doctors around here. No joke! If we all stick together,  share our knowledge, It will help us all. Where are you from? We live in Carroll County, Ky. I am so full of questions!! Am looking forward to hearing from you again. If you need dosages on growth hormone, or anything just let me know.  Sincerely,  Judy

Hi Angela

glad to hear that,i plan to take Lewis to the Boston if this drug gets approved,the European process is a bit behind the US and time is muscle.Fingers and toes crossed it all works out well for your son.Will probably be asking you again in a few months :) Thanks for your reply,Clare