Liv’s Story

Hello Everyone! My name is Liv Chaponis, and my epilepsy journey started at the age of ten. After coming home from Christmas shopping with my family, I had a seizure that completely threw us for a loop. On New Year’s, I had my second seizure and was diagnosed with epilepsy.

I was diagnosed with refractory generalized photosensitive epilepsy and Jeavon’s syndrome. Living with epilepsy has been a wild ride, filled with both blessings and despair. My treatment began at UMass Memorial Hospital, where I was referred to specialists in Boston. At Boston Children’s Hospital, some of the world’s best childhood neurologists provided my family and me with the answers we desperately needed, significantly improving my quality of life.

There were many times when my seizures were controlled, only to have a breakthrough. The necessary medication changes or dosage increases often caused side effects that greatly impacted my life. I struggled with medication sensitivity, experiencing weight loss, hair loss, acne, and memory and recall issues at school. However, I never gave up. I refused to let epilepsy hold me back from achieving my goals and ambitions. I danced competitively and professionally, joined numerous school organizations and honor societies, graduated with a high GPA, and attended college at Sacred Heart University. I earned a Neuroscience degree and had the honor of giving the graduation speech. Though I sometimes struggled mentally and faced obstacles I never thought I would overcome, I reminded myself that epilepsy does not limit my capabilities—I just needed the grit to push through and ask for support when needed.

When I stopped seeing myself as a victim of my epilepsy and started seeing opportunities to help others like me, I dove headfirst into volunteering and fundraising for the Epilepsy Foundation. One day, I posted a TikTok video reenacting my diagnosis story, expecting only friends and family to see it. To my surprise, it garnered almost 4 million views and numerous comments from others with epilepsy or their families and caregivers, all sharing their experiences. Seeing how many people related to my video, I knew I wanted to use my platform to blend humor with education about epilepsy. This led to my invitation to join the Epilepsy Envoy, where I help with legislation involving epilepsy and seizure-safe schools. I currently work as an EEG Technologist, helping people with epilepsy daily, which has opened my eyes to our shared yet unique experiences.


This past year has been a low point on the rollercoaster that is my epilepsy. However, I have a wonderful team of neurologists, friends, and family who support me, whether by sending care packages, playing games, visiting me in the EMU, or giving me rides and checking in on me. I deeply appreciate everything my village does for me. Although I am currently in an uncontrolled status, reading blog posts and meeting people in this amazing community inspires me to keep going, one step at a time.


Kind words you would like to share with a parent or someone newly diagnosed:
You are not alone! You have a village of supporters behind you (make sure to thank them once in a while). Epilepsy is a journey of ups and downs but try to stay positive. Easier said than done, I know, but you can achieve anything you set your mind to. Educate others and spread the word about becoming seizure first aid certified! Live your life and seize the day!

Connect with Liv C:
Email: olivia.chaponis221@gmail.com
Instagram: @liv_chaponis221
TikTok:   https://www.tiktok.com/@liv_chaponis221
Lemon8: @liv_chaponis221