Saturday, June 8, 2013

National Duchennes Awareness day. Please help to give our boys the gift of time.

Today, June 8th, is National Duchennes Muscular Dystrophy Awareness day.  

Duchennes, or DMD affects 1 in 3,500 boys. It can come into any family. It knows no boundaries and is non-discriminate. It does not care your race, where you live, or if you have a family history or not, it can happen to any family!  
It happened to us.  Duchennes entered into our family when Ryan was 5 yrs old.  We have no family history of it and we were taken completely by surprised.  Although the diagnosis its self is probably one of the hardest things you will ever  hear, when you are told  that there is nothing you can do to help your son makes it one of the worse things you will ever hear.  Currently there is no effective treatment and no cure. Duchennes is 100% fatal. Your son is given a death sentence with this diagnosis. That is why today is so important for those of us that have boys in our life that are dealing with this.  We need people to be aware of this disease, once awareness happens then the community can help us to push to find a safe, effective treatment or cure soon.  Soon is the big word here. We don’t have time on our side; you see DMD causes our boys to die at a young age. Young age meaning most don’t live to see their 20s. Ryan is almost 16 yrs. old. So thanks to DMD Ryan’s life is ¾ of the way done. Can you imagine that? That is the reality of what we are dealing with.  I won’t even get into the details of what he physically has and will go through in his short life thanks to DMD.  

Time, we don’t have the luxury of time.  So for this one day, would you please post this on your time line? As I said, DMD parents feel helpless, but one thing we can do is push that DMD awareness happen. As we all know in our world, those things that have the most press and exposure are the things that get the most attention. We are hoping that more exposure will mean more pushing for research, which will hopefully one day SOON bring hope to DMD families, to Ryan . 

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