I got an email from my friend, Kelli, asking me to participate in a campaign called End Duchenne with hopes to raise more awareness for the disease, Duchenne Muscular Dystrophy. Kelli's son, Elijah (who starts 4th grade this month), was diagnosed with the disease a few years ago. I had only heard of Muscular Dystrophy before I met Elijah and his family, but didn't really know much else about it.
DMD normally only affects boys, as it is an x-linked genetic disorder. The disease can occur spontaneously or can be carried by a mother to her son. DMD causes relatively rapid progression of muscle deterioration because muscle fibers are constantly dying away, being replaced by useless fatty deposits. In the history of this disease, most boys are permanently dependent upon a wheelchair by an average age of 10-12. It is common for boys to lose their battles with the disease in their late teens, and most do not live into their thirties due to respiratory and cardiac failure (the lungs and heart are the two most important muscles we have!). Despite these statistics, there is hope that the children fighting Duchenne will be spared by advocacy, research and faith.
I think the idea of the campaign is so cool and simple--print out a declaration, write your name (and give it some "flair" if you want to be like Emma and me), take your picture, then load it to the website (EndDuchenne@ParentProjectMD.org). With more exposure and awareness, there is hope that advanced treatment and eventually a cure might be found for young boys suffering from this disease. Please feel free to participate in the campaign along with us! The more the merrier!
You can check out Elijah's personal website if you want to read the story of an adorable, fun, sweet and resilient little boy: www.caringbridge.org/visit/elijahjamesmiller
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