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.

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Comment by Gretchen Letteney on September 25, 2009 at 5:39pm
Thank you to everyone for your kind and supportive messages. I haven't been on the computer much lately so I apologize for not responding sooner.
Best wishes,
Comment by Laurie Hoovestol on August 24, 2009 at 10:19pm
Thank you for letting everyone know about your son. I'm so very, very sorry!
Comment by Anita Bullers on August 23, 2009 at 9:08pm
Thank you for sharing a little about your courageous son, Jim, with us. I am so sorry for your loss. Many prayers are being sent up to heaven for you and your family.
Comment by cheryl cliff on August 23, 2009 at 10:39am
Each passing by a DMD boy or man drives us to further urgency to end Duchenne. It MUST stop, and soon I hope. I am so sorry to hear of your son's death Gretchen. My heart and prayers go out to you in this sad time. Rest in peace Jim Letteney.
Comment by Samantha Dearing on August 23, 2009 at 10:34am
Our entire family will keep you guys in our prayers. I am so sorry for your familys loss.

--Samantha and family
Comment by Jacobs Mommom on August 23, 2009 at 8:48am
Gretchen and family,
I'm so so sorry for your loss. My prayers and thoughts go out to you as you grieve the loss of your son, Jim.
Comment by Teresa Buchanan on August 22, 2009 at 7:57pm

I am so sorry for your loss. Thank you for sharing. I will keep your family in my thoughts.
Comment by Ian Anthony Griffiths on August 22, 2009 at 7:54pm
I'm really sorry to hear of your loss Gretchen, my deepest condolences to you and your family. Rest in peace Jim.

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