My name is Lily and I’m 14 (almost 15) years old and was diagnosed when I was 11. I was diagnosed with benign rolandic epilepsy with centrotemporal spikes or BRECTS. As of this summer, I am two years seizure free and am able to grow out of this type of epilepsy. In a few weeks, I will hopefully be cleared from epilepsy.
I’m also a Girl Scout working on my Gold Award Project (the highest award I can earn, similar to the Eagle in Boy Scouts). When I was first diagnosed, the doctors made me watch an informational video about the general aspects of epilepsy and what the main types of seizures are that you can have. I go to a neurology department that treats mostly children so naturally, the video had many kids in it.
For an 11 year old, watching another kid have a seizure is scary. Not long after that, I realized I wanted to change something. I worked through the other two awards you need to get before you can start the gold and the long awaited arrival has come to an end. I can finally start my project!
My goal is to make a series of videos that caters to treatment and testing, main types of epilepsy, types of seizures, and some other main points. I’m planning on interviewing many kids with epilepsy so the video is more of a kid on kid conversation. Also, I don’t want videos of seizures in the video, I don’t want other kids to feel the same way as I did.