In the spring of 2016, I was diagnosed with Myotonic Dystrophy DM1, one of the many forms of muscular dystrophy. After my diagnosis, I spent many days at Boston Children’s Hospital undergoing medical tests and meeting with various specialists. Every week there were new obstacles for me to face and information to process. After a while, I started to pay attention to the kids at the hospital; many with similar conditions to mine. Most of them were younger than me, but their conditions were far worse. As I would sit and wait for my appointment, something inside me said that I needed to make a difference in the lives of these kids. I asked myself, “What could I do? I’m just a kid. I can’t help these kids. I can’t even help myself.” Then one day a representative from the Muscular Dystrophy Association reached out to me to see if I needed any support or wanted to learn more about the organization. At first, I didn’t want to speak with her because it made my diagnosis even more real. Eventually, I worked up the courage to contact her and just like that, the dots were connected for me and I realized that there was something I could do. I could hold a fundraiser for the MDA not to help myself, but to help all those other kids who are suffering far worse than me. With the support and encouragement from my parents, teachers, coaches, friends and mentors, I am organizing and hosting a community wide walk/run for the MDA event at my school, Whitinsville Christian School, on April 22, 2017 coinciding with this online MDA My Way campaign to raise money and awareness of neuromuscular diseases.
The money I raise will help children and adults in our community, and will also help support innovative research to change the future for people with neuromuscular disease.
About the MDA
Every day, children are born with muscular dystrophy and adults are diagnosed with ALS and other life-threatening diseases that take away their most basic freedoms - like walking, talking, eating, hugging, and ultimately life itself.
MDA is working to give these abilities back through early intervention, local engagement, and the search for better treatments and cures.
I am a senior at Whitinsville Christian School. I have always been a science geek and especially love the study of biology and genetics. Long before my diagnosis, I had decided that I would major in biomedical engineering/genetics in college, but now I am even more focused and determined to follow my passion because for me, it’s personal.
Walk/Run Event Details
Date: Saturday, April 22, 2017
Time: Check-In from 8:30 a.m. to 9:45 a.m.;
Walk (Track) begins at 10:00 a.m.
Run (XCountry Trail) begins at 10:30 a.m.
Location: Whitinsville Christian School, 279 Linwood Avenue, Whitinsville MA 01588