I had my first seizure when I was 10 years old and in fourth grade. We had been to a Celtics game the night before and I was just lying on the couch when I fell off and onto the floor. One of my brothers was in the room with me and called for my mom. It was really scary for all of us. About a week later, I had another seizure in my sleep, so my parents decided to take me to Boston Children’s Hospital to be evaluated.
Even though one of my aunts has epilepsy, it was still surprising to be diagnosed — we just weren’t expecting it. My doctors put me on medication and that seemed to manage the condition pretty well until the fall of 2015. Then, my seizures started getting worse. I had something like 12 to 15 seizures in just six months.
Finding the right medication for epilepsy can be tough. The good news was that the new regimen of medications my doctors prescribed did a great job of keeping the seizures in check. The bad news was that they totally wiped me out. I was sleeping about 15 hours a day — I’d go to school and then come home and need to nap for three hours before I ate dinner. I play basketball, football and other sports, but I didn’t have the energy for it. I was too tired to even hang out with my friends.
Dr. Phillip Pearl at Boston Children’s Epilepsy Center worked with me and my parents to change up my medication regimen so that I wasn’t so exhausted. He was even able to take me off about half of my meds without the seizures coming back.
That change has made all the difference in my life. I’ve been able to get back to playing school sports, and I’m excited to keep playing football and to try out for basketball when I start high school this fall. The experience really got me and my parents thinking about what we could do to help other kids with epilepsy. We’re a pretty athletic family — both my parents have degrees in physical education — so we thought it would be cool to combine sports with giving back.
Through our research, we learned about a nonprofit program called Athletes vs. Epilepsy, which is part of the Epilepsy Foundation. After a lengthy application process, I was selected as a Youth Ambassador for the organization. As part of this work, I’ll be helping plan a fundraiser in my hometown, including a charity basketball game, cookout and visit by a celebrity athlete from the program.
What I’m most excited about, though, is helping spread the word about epilepsy to schools, families and other kids. There’s a lot of confusion out there about epilepsy: One person I spoke with thought it was the same thing as autism! I want other kids to see that they can still be successful, be active and play sports with this condition. You can have a great life with epilepsy.
Learn about the Epilepsy Center at Boston Children’s Hospital.