Today is World Duchenne Awareness Day. Duchenne is a fatal genetic disorder with no cure considered to be one of the most severe forms of inherited muscular dystrophies. Duchenne affects approximately 1 in 3,500 male births worldwide and is usually recognized between three and six years of age. Typically most boys lose their ability to walk by age 12 and in most cases lose their life in their 20's. There is currently no cure, which is why it is SO important to spread information about this horrible disease.
In honor of today, we are sharing the story of these beautiful boys in the photo above, Hunter and Noah:
THE SUMMER OF 2017...
was like any other with three small boys, lots of playing, swimming, and playground time. After an accident sent our middle son, Hunter, then two, to the hospital, we were told he had elevated liver enzymes. Upon further evaluation with a specialist, we received the diagnosis, Duchenne Muscular Dystrophy, a progressive, incurable, fatal disease of the muscle. While we were shocked by the diagnosis, we learned this was a genetic disorder and our youngest son, Noah, then one, also had the disorder and our oldest, Carter, then four, had been spared.
While our hearts were broken, we researched and learned as much as we could about the Duchenne. We learned there is so much hope in the community that TREATMENTS for this disorder are near that can change our boys’ lives.
We started the Small Heroes Foundation for many reasons. We want to contribute what we can to gene therapy clinical trials. We want to provide families with assistance for uncovered medical equipment to give their Duchenne sons the best life possible. We want to save our sons’ lives. And we need your help. Any donation to our foundation, nothing is too big or small, can help us achieve our goal. Thank you for your support.
-The Small Family-
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