#HelpSanta: Donate to the Les Schwab Q13 FOX Toy Drive

Russell Wilson, others join the fight at Seattle Children’s with Strong Against Cancer

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1 Comment

  • Laurie

    Dear Russell,
    I wish my son had cancer. I know that sounds strange, but, you see, his disease currently has no cure, or even an FDA approved treatment. My son Sam is 12 and in 7th grade. He has Duchenne muscular dystrophy. Duchenne is a progressive muscle wasting disorder that slowly robs affected boys (and some girls) of their ability to walk, lift their arms, move any part of their body, and eventually to breathe or have a heartbeat. Sam lost his ability to walk this last year. He can no longer get himself dressed or brush his own teeth. We’ve accumulated over 100,000 airmiles and even lived in England in order to find a treatment to try to slow this deadly monster down. We now live in Seattle. Sam has just enrolled in a clinical trial that shows promise in slowing the progression in Duchenne. He now has to go to Seattle Children’s every single Friday for an IV infusion of the medicine. We can only hope that it works for him.

    So, why do I wish my son had cancer instead of Duchenne? Chances are, you’ve never heard of Duchenne. And that makes all the difference in the world when it comes to donation dollars and money for research, clinical trials, treatments and a possible cure. As a community, we’re using our voices to try to change this, but attention for rare diseases is difficult to garner. Never mind that Duchenne is the number 1 genetic killer of boys in their childhood. The average lifespan is currently early- to mid-20s. Do you remember what you were doing when you were 21, 22, 23…? So many children with Duchenne will not live that long. If they do, they no longer have control of their body. They’re often on ventilation.

    I don’t know if you can help. I figured it couldn’t hurt to try. At the very least, I’ve made another person aware of Duchenne.

    Much luck to you and all the Seahawks this weekend. GO HAWKS!!

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