I had a few weeks of emotional hell but have since felt peace about it too ....as much as you can feel peace about such a thing.
My biggest concern right now is about appropriate types and levels of activies. Some take a much more conservative approach than what our Dr has suggested.
If you read on this website a bit more, you will find that most parents travel there. I found free medical flights too. Dr. Wong is an expert. We went to our local peds neuro and I knew more than him. They dont try and prevent the disease from progressing, just try and help when it does. I hope this helps. It helped me alot to connect to other parents. I think I have learned the most from them.
Hi Renee, my son didn't really start asking questions until he was ready to go into a wheelchair part time. I still don't think he understands the whole picture of having DMD, he knows he has since since he goes to MDA camp every year (which he loves) but he just thinks his legs don't work ver well and that's why he's in a wheelchair. He is just starting to realize that the older he gets the harder it is for him. Having the learning disability along with the DMD maybe is a blessing in disguise, it makes him not know what's going to happen down the road when he's even older. He sees older kids at camp like with the breathing tubes and he kinda just stares, I'm sure he's thinking to himself, I hope that doesn't happen to me ya know. I just share with Tyler when he asks, I try to explain things to him the best that I can for him to understand. I would do the same with your son, when he's ready he'll ask questions then is when you start explaining things I think.
Hi Renee. Welcome to this site, it's nice to be able to connect with other parents going through the same daily struggles with DMD. My son was diagnosed at age 3, he is now 12. I went through tons of emotions and heartache when he was diagnosed, as do all parents I'm sure. You just have to live day to day and pray they will find something soon to help our sons. My faith and family support is the only thing that gets me by sometimes. These boys are so special! Hopefully the exon skipping trials will be an answer to our prayers. God Bless. Holly
I'm sorry you are here but glad you found this site at the same time. My son Kian was Dx. 1 1/2 yrs ago. We were told he was mildly autistic with dyspraxia. It has been a hard time but I have learned alot. I learned that the best MD's are in Cincinatti and how to get my son treated there. We went in May. I learned what vitamins help, what doesnt. This site is great. I get on every day, and in so doing I have learned about all of the medical advancements that may change the outcome. My prayers are with you.