My son was diagnosed this week with Duchenne. He has exon deletion 45. He is 5.5 years old (will be 6 in January). We are seeing Dr. Nancy Kuntz at the Lurie Children's Hospital in Chicago. I have a…Continue
"That's not a bad idea at all. My wife and I have been making an effort over the last number of years to get and stay in better shape. My wife is a carrier, and has some muscle soreness that may or may not be related to her…"
"I think our boys get along as most brothers would. For the most part they're great together, but they fight too. Some of it is probably because they are both on Deflazacort and there are some heightened emotions that go along with…"
"Thank you both so much. We are still trying to just wrap our minds around this. In just 6 weeks we went from finding a high ck, spending 5 days in the hospital for a hip effusion, first going to rheumatology (my father has polymyositis so…"
"Hi Hally, I'm directly across the state from you in the beautiful northwest corner of Illinois. We are on year 5 of diagnosis - also diagnosed at age 5. Please feel free to email me with any specific questions. You are…"
My son was diagnosed this week with Duchenne. He has exon deletion 45. He is 5.5 years old (will be 6 in January). We are seeing Dr. Nancy Kuntz at the Lurie Children's Hospital in Chicago. I have a lot of questions that I think parents who have been through this could help me with. I don't think it makes sense to just bombard the message board with a bunch of questions- so if you are able to help me out please inbox me so I can contact you. A greatly appreciate your help!See More