"Thank you Keith and Jill, sorry to hear that your lovely son chase has already been on this difficult path for 10 years!
Your words are very comforting. I can't really think about future since I got the news, but knowing that you have…"
"Very sorry to hear this. I can still vividly remember the 'punch to the gut' when we heard the news about our son almost 10 years ago. However, you've found a great community in PPMD.
PPMD recently published a 10-year…"
My son Max was diagnosed with DMD less 2 weeks ago. It was hell to swallow this while keep tracking all relevant information for his treatment. We now face a dilemma and would like to hear your suggestions based on your experiences. Max is 4 and since he has not taken any medication he is eligible for two clinic trials in UC Davis where the medicine in test are supposed to have less side effects - called Vamorolone and Catabasis if anyone came across it. Both trials are for about 1 year. The…See More
"My son is 19. He will turn 20 in June. He has DMD. We got the diagnosis at age 6. we have always given him age appropriate answers. There are booklets available on the MDA website that help explain the process in children's terms that I…"
"We've heard the same about the EZ Lite being good for some applications, primarily light use and travel. There's no suspension, so per conversations with an EZ Lite representative and our physical therapy team, it's not suitable for…"
"Our sons are both 15 and they are at different stages of how they perceive why they are living unlike other kids. We have always played it "by ear," as they say or on a need to know basis keeping explanations simple when…"