Owen’s Story

Owen is a very bright, funny, creative and beautiful five year old who happens to have Merosin Negative Congenital Muscular Dystrophy. He uses a mobility device, but really is not limited in any way. He has spirit and loves to talk to everyone that he meets.

His diagnosis was hard to understand and deal with in the beginning. But as Owen has started to become his own person, we have realized that he is an amazing child regardless of any perceived “disabilities” and that we would not trade him for anything in the world. That does not mean that we are not hopeful for a treatment in the near future, because we are waiting for when this happens and believe that with the help and drive of CureCMD, this dream is right around the corner.

In the meantime, we are raising Owen to believe in himself and to know that he is a remarkable human being just as he is. We hope that he is an inspiration to the able bodied community since he is such a happy and well adjusted little guy, who by just being himself will help to improve acceptance and tolerance of differences in others.

We hope that you are visiting this site to help support our cause. If not, please spread the word to others who may want to help in any way possible. Because together, we can.

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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