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Yes, this was a boy in my town. He lived across the street from a friend of mine. I never did get to meet him, so I don't have any information on his health other than he'd had a rough year. There is a viewing tonight. I'm not sure when the funeral is, but I don't think I'll be able to bring myself to attend. If I get other information, I'll be sure to pass it along. His name was Stephen, and I'm hoping to have some contact with his family in the future. I'd very much like to add his name to my fundraising efforts and carry a picture of him with me when I run my marathon.
The story I heard about a 13 year old who passed was named Brian. See article: http://texomashomepage.com/content/fulltext/?cid=29541
I just read about Brian myself and it is very sad to hear of losing another boy so young. We keep hearing that boys are living longer but it doesn't seem that way to me. It makes me wonder if those older boys/men were ever tested and were diagnosed with DMD because I know of a few of them and they said there were never actually tested.
Jacobs Mommom said:I just read about Brian myself and it is very sad to hear of losing another boy so young. We keep hearing that boys are living longer but it doesn't seem that way to me. It makes me wonder if those older boys/men were ever tested and were diagnosed with DMD because I know of a few of them and they said there were never actually tested.
This is a reply to Jacobs Mommom:
There are quite a lot of young men with DMD, my son is 22 and was diagnosed at age 3 through genetic testing then and again just a few months ago with a deletion on exon 44. There is also a set of twin men age 51, in our area also with DMD. We know many DMD families with young men living fuller,active lives. Though I will say they face many challenges as well. Please do not give up hope. Many young DMD men are living longer.
Katherine M. Reynoldson said:Jacobs Mommom said:I just read about Brian myself and it is very sad to hear of losing another boy so young. We keep hearing that boys are living longer but it doesn't seem that way to me. It makes me wonder if those older boys/men were ever tested and were diagnosed with DMD because I know of a few of them and they said there were never actually tested.
I just found a story about another young teenager lost and he sounds like such an amazing kid!!! So sad he didn't actually get to be at the inauguration today, I know he would have represented all our boys well.
http://www.theoaklandpress.com/articles/2009/01/20/inauguration/doc...
I just saw this as well. Why so many so young lately? It hurts my soul.
Angela said:I just found a story about another young teenager lost and he sounds like such an amazing kid!!! So sad he didn't actually get to be at the inauguration today, I know he would have represented all our boys well.
http://www.theoaklandpress.com/articles/2009/01/20/inauguration/doc...
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