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 …

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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Comment by donna on December 14, 2008 at 12:00pm
thank you for sharing this story. I have a friend who's son is 23 and is still able to walk somewhat with the help of braces. He had his heel cord cut when he was 13 and had braces to walk since that point. he was never on steriods either. He is going to college and is driving too. The best advice that she gave me when my son was diagnosed was to do tour best to let him be as normal as possible. Encourge them to be as independant as they can for as long as they can. Ryan being the youngest of 4 boys has wanted to do many crazy things to keep up with his brothers. Obliviously there are some things that they just can't do but there are many things they can do just takes some thinking and some extra help. Be creative!
Merry Christmas and May God bless everyone this coming year!

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