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JEN HERE, JAVIER’S MOM

If you don’t already know him,

Javier is a hysterical, quirky kid who loves life and proudly marches to the beat of his own drum.  He loves his Nintendo Wii and Katy Perry almost as much as he loves writing risqué mad-libs and eating bacon in any culinary format.

When Javier was 3 ½ years old, a darkness fell from the sky, landed on my family and broke it into more pieces than could ever be imagined.  So many pieces that life as we knew it was over.  Javier was diagnosed with Duchenne muscular dystrophy (DMD).  The prognosis is horrifying.  It’s 100% fatal.  The disease is rapidly progressive, and affects every muscle in a kid’s body; their skeletal muscles, the heart which is a muscle, and the muscles of respiration.  By adolescence, the kids are wheelchair bound and by their mid twenties, they die.

This is the type of news that paralyzes most; the sadness, the anger and the fear is enough to stop anyone in their tracks.  For my family, we were determined to push through this… and to save Javier’s life.  In just a few months after we received the tragic news that our son was diagnosed with DMD, we decided to start Hope for Javier, a non-profit organization that invests in cutting-edge research aimed at finding a therapy or a cure, as well as supporting advocacy efforts to maximize the research investment and ensure the best possible quality of life for these boys.

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