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By Jake Marazzo
My name is Jake Marrazzo and I’m a freshman at Hudson High School. I am 15 years old and live with a rare disease known as Duchenne Muscular Dystrophy, or DMD for short. Duchenne is a muscle-wasting disease that takes away dystrophin from my body. I am now in a wheelchair full time.
I was first diagnosed with Duchenne when I was 8 years old and at the time did not understand exactly what it was. I figured out more and more about it as I gradually lost the ability to walk. When I got my first wheelchair, I was relieved because I used to fall often when I walked and with this chair I wouldn’t fall anymore. But of course I felt very sad that I could not stand up anymore because I could no longer jump on the trampoline with my friends or have fun running.
At my high school, I perform in musicals, play tennis for fun, and am an honors student. Duchenne limits my lung and heart capacity, and I would be absolutely heartbroken if I got too weak to perform on stage and, more importantly, in my daily life. A cure would mean that I would be able to walk, put on some fantastic performances, play tennis more freely, and do my schoolwork without losing my ability to write.
Despite Duchenne being a rare disease, many boys across the globe are affected by it. This is why my family and I created an organization called 4 Jake’s Sake, which aims to make the homes of families dealing with Duchenne more accessible. We host a 5K every year to help raise money and awareness for our cause.
Science has offered the world great things, and I know that nothing is impossible, so I believe a cure will be found. Hopefully you and your team of scientists will be able to achieve this in the future. I’m not just speaking on behalf of me, but the many families living with Duchenne. I also have a nephew that has this disease; his name is Tyler. I want to see Tyler grow up and play baseball. Seeing a cure would clearly create bright futures for everyone with Duchenne.
Sincerely, Jake Marrazzo
Sponsored by Pfizer
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