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My oldest son, age 9 was diagnosed with dmd at the age of 5 and I wasn't surprised due to the fact that I had three uncles and a cousin that had dmd. I am a carrier of the dmd gene. I also have two daughters and another son who doesnt have it but am pregnant for child #5, a boy that may have it too. Tim is still walking but with difficulty, cant get up off his feet without assistance and will be getting braces next week. His overall health is good other than the fact he has chronic constipation and a mild learning disorder.

Looking forward to hearing your stories.

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Permalink Reply by Kari on January 9, 2009 at 9:27am

Welcome to PPMD Community Jewel, this is a great place to share and get answers. Congrats on your new little bundle of joy. Children are a blessing from God, and I believe no child conceived is ever a mistake. You are truly blessed with five. It will be awesome to see your new little bundle of joy soon, and hopefully not be affected with DMD. I only have one child, my son Jared. He is 8 and we are fortunate he was diagnosed with Becker MD. Jared is doing well. Has to watch overdoing, but other than that, can't complain. I am a carrier but it was a surprise since there is no history in my family. I have a twin but she won't get tested since her son is fine and she won't go there yet.

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Permalink Reply by Jewel35 on January 9, 2009 at 9:32am

thanks!

Kari said:

Welcome to PPMD Community Jewel, this is a great place to share and get answers. Congrats on your new little bundle of joy. Children are a blessing from God, and I believe no child conceived is ever a mistake. You are truly blessed with five. It will be awesome to see your new little bundle of joy soon, and hopefully not be affected with DMD. I only have one child, my son Jared. He is 8 and we are fortunate he was diagnosed with Becker MD. Jared is doing well. Has to watch overdoing, but other than that, can't complain. I am a carrier but it was a surprise since there is no history in my family. I have a twin but she won't get tested since her son is fine and she won't go there yet.

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Permalink Reply by Lori Ware on January 9, 2009 at 10:15am

You can check out our story in 2 places...www.caringbridge.org/visit/seph or www.du.edu/magazine

Welcome!

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Permalink Reply by donna on January 9, 2009 at 11:33am

Ryan is 11yrs old. he was diagnosed at age 5. He is my youngest of 4 boys . He is the only one with DMD. We have no family history and i am not a carrier. He just happend to get this.
He is still walking around the house but uses an electric scooter at school and at the store ect. We have just recently ordered a power chair because he is needing more support for sitting. He is getting more tired gettting in and out of his scooter at school so with the chair he will just be able to stay in it and not have to get in and out during the day. Although at home we will continue to encourage him to walk as much as possible.
He is not on steriods, never has been. He has some learning disabilites as far as reading and math goes but he has so much wisdom beyond his years!