MY NAME IS BELLA AGUILAR AND I HAVE LIVED WITH EPILEPSY SINCE I WAS 18 MONTHS OLD.

For a long time, my seizures limited what I could do. I couldn't play sports or attend sleepovers at friends' houses. I was also falling behind in school and had to do occupational therapy to relearn how to write and even to grab and use eating utensils.

AUTHORING HER OWN STORY: From an early age, Bella has always been big on community service, and she often spends her downtime giving back to the communities, Now her dad, Chris, and her mom, Shannon, are getting ready to send her off to college next year.

My seizures would keep me home from school for days and sometimes even weeks. It was very hard to socialize and make friends. It was even harder to keep up with my schoolwork. I struggled to memorize facts for school and to remember things. 

I spent countless days in rooms at children’s hospitals in: Florida, Massachusetts, and Minnesota. I learned to socialize better with doctors and nurses in hospitals, than kids my own age. To help with my seizures I had a to drink a LOT of medicines. Sometimes the medicines worked for a little bit and helped. Other times, they did not work at all. It was frustrating being a small kid drinking so many medicines. Some of them didn’t taste good at all! 

When my parents told me about VNS Therapy™, I was cautiously optimistic as I learned about what it might offer. When I first got my VNS Therapy™ device, I wasn’t used to it, and I remember feeling common side effects like hoarseness and cough. My voice quivered sometimes when I spoke, which I also learned could be a temporary side effect of VNS Therapy™.  

A few months after my procedure, though, my quality of life was better than ever! I started doing better in school and remembering things in class. I used the fact that my voice quivered as an opportunity to tell people about VNS Therapy™ and how it worked in my life.

I went from falling behind in school to taking advanced classes. I was also invited to take the SAT in seventh grade, as a rising student for my county. I started doing sports. I joined the soccer, volleyball, basketball, and track and field teams in middle school. I was the only student in my school – both male or female – to make all four sports teams for the three years of school. They even gave me an award at my eighth-grade graduation. I felt so proud of myself for this accomplishment. 

I went from falling behind in school to taking advanced classes. I was also invited to take the SAT in seventh grade, as a rising student for my county. I started doing sports. I joined the soccer, volleyball, basketball, and track and field teams in middle school. I was the only student in my school – both male or female – to make all four sports teams for the three years of school. They even gave me an award at my eighth-grade graduation. I felt so proud of myself for this accomplishment. 

“I think back to the day you were diagnosed at 18 months old. I can remember that day so clearly. I sat there, tears sliding down my face as I was told you would get worse— your quality of life would decline; you would never graduate high school; your future would be one of struggles and defeat. I listened to those words, and they literally broke my heart and stole my dreams for you and your future. Today was a day we never thought would happen.”  

– Shannon Aguilar, Bella’s mom, after Bella received her college acceptance letter to University of North Florida on July 12, 2023, the first of what they now expect to be many. •