My son, Jim Letteney, died on July 30th. He was only 21 and had cardiomyopathy due to the Duchenne MD. His heart lasted longer than anyone thought. I was with him. He passed away at home. Jim was very inspirational and brave. He never complained and was an optimistic young man. He did talk about feeling sad about having DMD and he would say that it wasn't fair that he had it. He asked me quite often if we had done everything that we could to help him. It wasn't fair that he or anyone else has this disease. The cardiologist was very good and the medications really helped him to go on as long as he did.
On his last day (I hate saying that), he told me that he wanted to be "normal" like other people who don't have Duchenne MD or are not on the autism spectrum. I told him that he accomplished so much in his life. He graduated from high school and he and I fought very hard for him to be able to take classes at a local community college. He was able to use handicapped accessible transportation with an aide accompanying him. We actually had a pro bono lawyer help us to make that possible. It really was hard for him to accept when even the online classes were too tiring for him. He did it though. He was determined to go to college. That determination never left Jim.
The thing is that he would talk about what he felt sad about and would cry sometimes but then he would dry his eyes and go on with his day doing things like using his laptop computer and watching his favorite shows on television. He discovered facebook and set up an account there and had many friends and he posted so many great messages there.
I miss him so so so much. It seems unreal that he has died. I know he always hoped that a cure for DMD would be found.
A couple of the things that I learned from Jim is to enjoy each day and each moment and to show affection to the loved ones in your life.
I wish that I could hug him and kiss him on his forehead one more time. The legacy that he left behind was one of love,peace, courage, and optimism.