Richie, JAVIER & JEN
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.
When Javier was 3 ½ years old, a darkness fell from the sky… Jen
Our mission is simple and crucial
and we have never wavered from it since the day we started our foundation. Our goal is to change the predicted outcome for all boys diagnosed with Duchenne. We raise money, identify and advance projects with the best shots on goal to prolong life expectancy in Duchenne.
We are in a race against time. My family and I have been acutely aware of this fact since day one. And unfortunately Duchenne is winning. Progress is simply not moving fast enough for us. There currently are no drugs available for kids to take to slow the progress of this disease, with the exception of steroids which does very little to slow the devastation and worse, its associated with a host of terrible, terrible side effects. So bad in fact that many children – Javier included – are simply not able to take the drug itself.
We refuse to accept defeat. We started out just a family on a life saving mission – burning the midnight oil, scouring the internet to learn as much as we could about the disease while also developing a strategic approach and meaningful relationships to serve as the underpinnings of this foundation. We are still just a family on a mission, but can now point to thousands of supporters, donors, heroes, and friends — and over half a million dollars committed to DMD efforts!
We need to keep moving forward on the promise we made to Javier
to turn our hopes and dreams for him into reality! With your support and much needed funding, we CAN get there! Please help us finish what we started. Please help put Hope for Javier out of business. Out of business because this generation of DMD boys is here for the cure. Out of business because Javier owns a future.