danielle's story

My name is Danielle and I’ve had Epilepsy for 5 years now. I was diagnosed at age 10 at my sleep-away camp on June 24, 2016. During rest period, I was passing notes with my friend who was on the top bunk directly across from mine. As we were passing notes, I suddenly got extremely tired and extremely thirsty. I sat up to get my water bottle and the next time I woke up I was in the ambulance soaking wet. I was brought to the local children’s hospital with camp staff members as my mom drove 4 hours to get to me. I spent one night at the hospital and they told me they thought I was just dehydrated. They sent me back to camp with a certain amount of water to drink each day. That night, I was terrified to go to sleep. I was scared that the same thing would happen, and I wouldn’t be allowed to go back to camp. I sat outside with the consolers for a while until I felt comfortable going to sleep. I got back on my top bunk and went to sleep. The next time I woke up was in a golf cart on the way to the health center. After that, the next time I woke up was in the trauma room of the same children’s hospital at 2 am. I couldn’t speak and couldn’t move so I had no way of communicating anything to anyone. I was also with the camp staff again because my mom had driven back home. My mom drove back up in the middle of the night. After a week in the hospital, countless tests, EEGs, MRIs, and CT scans, the doctors finally diagnosed me with Epilepsy. They concluded that I had 2 grand mal seizures that year at camp.

I was put on medication that worked well. I was seizure-free for about 2 years until I started having aggressive Myoclonic seizures. Those seizures carried on for a very long time and resulted in many medication switches.

Last year, my medication started working well again and I had been seizure-free for long enough that my doctor allowed me to go back to camp ( I had continued going the past years because my doctor allowed me and I was completely fine AND I even met others at camp with Epilepsy!) At camp last year I had a few scares which resulted in medication changes at camp. Luckily one of my consolers had Epilepsy so she would mention something to me if anything looked off. The summer ended with a few scares, but no official grand mal seizures. But I did end up switching medication AT camp.

This year I switched medication again and the new one I’m on has been working great so far!! My camp was open this past summer (no corona for anyone the whole summer! We even made the news channel for that!) and I took a HUGE step in my journey. This past year I walked back into the cabin that I had my first seizure in. I knew the counselors in the cabin, and I walked up to the bed and got to look at it for a minute. Seeing where I started and where I have come has been taught me how strong I am and how much I can overcome.

I had a 48-hour EEG in February that looked perfect! I am now learning to drive (which is exciting yet terrifying at the same time), training and competing in CrossFit competitions, playing lacrosse for my school and advocating for Epilepsy in my community and school!

I hope my story helps anyone who feels alone or ashamed of their Epilepsy. I love to stand up and advocate my BEAUTIFUL brain and help others in my community do so as well! Epilepsy is something that has impacted my life tremendously and I think it’s so important for more people to educate themselves on it and what to do if you see someone having a seizure. I hope my story helps at least one person feel more comfortable knowing they are never alone.