CURE - Citizens United for Research in Epilepsy It's Time We Found a CURE CURE Epilepsy Research

Story TitleMy story starts at home in 1996, I was 16 months old. It was a calm and relaxing morning until my dad had heard sounds coming from my crib and came to check on me. When he looked over my crib he had found me shaking like crazy non-stop and didn’t know why I was doing that. He had screamed my mom’s name to come see for herself, they couldn’t believe that their 1st baby girl was having something that they didn’t recognize. They had called 911 and I was rushed to the hospital. At this point, my mom and dad were lost and confused, they just wanted everything to be okay. As I was in the back of the ambulance with my mom, she had called practically the whole family to tell them to meet us at the hospital and she would explain more when everyone got there. My grandma had to come get my dad and take him because he was in such shock. At the hospital, my parents and family nervously waited in the waiting room to hear what was going on with me. The doctors had come out and told everyone that I was having a grand mal seizure and still not out of it. I was in my seizure I believe for over 12 hours or something like that. I was so bad the doctors told my parents, if she makes it through the night you can take her home. At one point when my mom and grandpa came to check on me, My mom believes I had opened my eyes and squeezed my grandpa’s hand when he was talking to me and then went back into my seizure. The next morning, I was brought home and was just like newborn baby all over again.  I went from learning how to talk, walk, and crawl to not being able to any of those things.

The next few years of my life were difficult and hard to get through. I was drugged up most the time, trying to find the right medication that would fit me. My parents were scared and worried that I would go into another one at any time and sometimes they were right. At the age of 9, my seizures had slowed down for a while and we thought I was cured. We were wrong! When I turned 14, I had developed a new kind of seizure called simple partials. A simple partial seizure is a deja vu seizure. I feel as if I had already been doing something or had already done it. They will come at any given moment and they will last anywhere between 30 seconds to 5 minutes. When I turned 16, I was not only taken off my medicine for a little bit but I developed a new kind of seizure called complex partials. Complex partials are a little bit more complicated than a simple partial. When I go into a complex partial, it’s like deja vu except now I get a weird taste, weird smell, or weird feeling. Which causes me to go sit down and breathe for a second. At 18, I was put back on my medicine and had found out the main source of where my seizures are coming from. I found out the main name for all of them are temporal lobe seizures. Now at 20, I deal with all 3 seizures and can get them at any point.

It’s a battle everyday but it’s a battle worth fighting for!

CURE epilepsy

Aubrey