Nine year old Hays Barrett has no problem walking the halls of middle school, in fact he’s pretty confident, but he’s also careful because he knows there is a chance he could have a seizure. They happen on occasion since Hays suffers from epilepsy.
The third grader was diagnosed in January when his seizures began innocently enough as quick muscle freezes or small twitches, like when someone is half asleep and their leg jerks. As they progressed to full-blown unconscious episodes, the seizures caused him to be tired and forgetful.
“I had my first big seizure at recess during the final week of school last year,” says Hays, “when I came to they asked me, was I okay, and that I scared them and all kinds of stuff. It made me feel better because they cared and nobody was mean, but I had no clue what had just happened.”
The Barrett’s spent the summer figuring out medicines and trying to find something that works and didn’t make Hays feel like a “zombie,” as he describes it. It has taken some time, but he is almost a month seizure free.
Hays’ mom, Julie, says she is amazed at how brave her son has been through all of this. “When we figured out what was causing the twitches, we were relieved to have an answer. However, when he had his first tonic clonic seizure, that relief turned to fear all over again. Hays was never scared though, just curious and confused. He got really into the brain and how it works and wanted to know everything about seizures. That helped him cope.”
Epilepsy is just a part of Hays’ life now and he’s adjusting well, but he is adamant that it won’t define him. He gets A’s and B’s and has a clear classroom favorite. “I understand science more than I do other classes, I ask a lot of questions about the human body because I want to know everything about how it works and what having epilepsy does to it. I’m going to be a doctor one day,” says Hays.
“It’s crazy to think all this has taken place in just one year,” says Julie, “it’s been a whirlwind. We’ve tried to not be too overprotective, but it’s hard sometimes. As a mother, I want him to have a normal life…normal just as a different meaning for us now. We are lucky that at 9 years old he is so interested in learning and understands how important it is to take care of himself.”
Outside of the classroom, Hays is a great big brother, avid pizza eater (pepperoni and pineapple is his favorite), and enjoys playing baseball A LOT. He says, “I didn’t get to play this summer because I was having too many seizures, I still went to the games and cheered on my team but that’s not as much fun.”
Hays plans to be back on the field this spring as long as his seizures stay under control. He also says that by the time he’s a grown-up, if there’s not already a cure for epilepsy, he is going to find one. He says, “If I’m already learning all about the brain now, just think about how much more I’ll know in 10 years!”
We hope he continues to be seizure free and can’t wait to see what great things this kid will accomplish!