Stay Hopeful and Never Give Up

My journey with epilepsy started when I was only 3 years old. However, because my seizures were atypical for what my parents and pediatrician thought were seizures, I wasn’t diagnosed until I was 4 after my mom brought me to a children’s hospital. After three years of trying a variety of medications to control my seizures, and a few different doctors and radiologists looking at my scans, it was discovered I had an operable form of epilepsy called focal cortical dysplasia. I had brain surgery when I was 7 years old and have been seizure-free for the last year and a half! 

For me, having epilepsy means you face challenges daily that you would otherwise take for granted. Showering by yourself, eating by yourself, riding your bike, going swimming, or walking to a friend’s house. Even going to sleep worry-free was not possible at times because my seizures were so frequent. My parents made several adaptations like putting a doorbell chime in my room that I could ring if I felt a seizure coming on that would alert my parents and my dog. My parents also had a heart rate monitor ring that measured my heart rate and would alert my parents if it spiked suddenly indicating I was having a seizure. They set up a ring camera in my room that would record any seizure movement to show doctors. We trained our dog to know what my seizures sounded like so he would come to comfort me the moment he heard me having one. 

My mom even came to my classroom to read to my classmates a story about epilepsy each year and to help my friends understand what was happening to me and learn how they could support me. My teachers assigned lunch buddies for me that helped notify a teacher if I started to have a seizure. Everyone in my family, my friends, and my teachers were so supportive and understanding.

I went through three long years battling my seizures and making new friends along the way - both in and out of hospitals. I am sharing my story to provide hope to other kids and adults to never give up. Keep getting second, third, and fourth opinions if you need to. What one doctor may not see, another might. When one medication does not work, another one might. When today’s medical technologies don’t work, tomorrow’s might. Stay positive and hopeful!