During this season of holidays, I wanted to pass along an incredible story. I was able to talk to a nurse that cares for a set of twins that have DMD. They are 51!!!!! They have alot of support with medical equipment but are mobile....In fact, they coach teams, go to university games and are out and about quite often! Their quality of life is good. At first I thought that they were BMD but was told that they lost ambulation @ age 8 which certainly would be more consistent with DMD. No steroids for these guys....The steroids didn't come on until late 80's and 90's.
We hear about boys living until the late teens and early 20's. I wanted to share an extraordinary story about some in their 50's.
I wish everyone DMD family a wonderful holiday season.
Char Burke
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