I’ve been getting asked lately how I feel about college. I’m really excited about the opportunity to go but also nervous about moving away from home. It’s a mixture of emotions I call nerve-cited. I’m sure most people feel the same way, but there’s another thing added on that I have to be nervous about, and that is other people taking care of me.
September 7th is World Duchenne Awareness Day, which aims to raise awareness for people living with Duchenne muscular dystrophy (DMD). In this blog, Jake Marrazzo, a DMD patient and advocate, shares his experience, providing a powerful story of inspiration to anyone who has been touched by this disease and was originally published by America’s Biopharmaceutical Companies on September 7, 2018.
My story starts on a basketball court in early elementary school where, despite my best attempts, I couldn’t seem to keep up with the other kids. I also noticed they had an easier time going up the stairs, and I really wanted to know why. After a few years of asking questions, at age 8, I was diagnosed with Duchenne muscular dystrophy or DMD for short.
Essentially, this genetic disease means that my body can’t make a protein called dystrophin, which my muscles need to keep moving. Without it, my muscle cells have started to weaken and die off. At age 12, I started using a wheelchair because walking became too difficult.
I’m 15 now, but in the seven years that have passed since my diagnosis, I have refused to let this disease slow me down. Getting diagnosed with DMD was extremely hard (although I think it was harder for my parents than it was for me), and I was forced to come to terms with certain limitations at a far earlier age than most people.
Blog and News Posts
- College Bound
- Virtual Event with Jeff Kinney and Jake Marrazzo on December 14
- One Wants to be a Letter Book Has Sold 500 Copies!
- Jake on the Dr. Phil Show!
- Driving with Duchenne Muscular Dystrophy
- Jake Marrazzo Chosen as WCVB Channel 5 Boston A+ Student
- Parents Swap Stories at the CureDuchenne ‘Futures’ Conference
- Father & Son with Duchenne complete Buzzards Bay Triathlon
- Jake Talks to 1st Year Medical Students at UMass Medical
- Hudson Mother & Son Complete Title 9 Triathlon in Hopkinton
- I Just Want to Show Other Patients that Anything is Possible
- Hudson Woman Will Compete in a Triathlon with Her Son Who Has Duchenne Muscular Dystrophy
The 4 Jake’s Sake Charitable Foundation helps families who have children with Duchenne Muscular Dystrophy.
4 Jake’s Sake Charitable Foundation
P.O. Box 238
Hudson, MA 01749