‘Not alone’: Raising awareness for epilepsy

Kent County

GRAND RAPIDS. Mich. (WOOD) — Skyler Moomey just wanted to be a teenager playing video games, going to school and playing sports, but everything changed when he was 13 years old. 

“I just woke up in the back of an ambulance time after time and was just told, ‘You had another seizure,’” Moomey, now 17, recalled.  

Moomey started having seizures in the middle of the night. They were what’s called grand mal seizures, which cause a person to lose consciousness and have violent muscle contractions.  

“It was really difficult because I couldn’t do so much just because I was going through two different kinds of seizures,” Moomey said.

During the day, he was having focal seizures. His face would change. He could still see what was going on around him but he couldn’t communicate.

Moomey had no idea what it looked like until his parents showed him videos. 

“To see that that is my body and that I wasn’t in control of it and it’s going into this big fit, it brought me to tears,” he said.

Dr. David Burdette, the head of the epilepsy program at Spectrum Health, said about 120,000 people in Michigan have epilepsy. Roughly a third of them have drug-resistant epilepsy and suffer seizures even while on medication.

He said raising awareness about the disorder is critical.

“We have very little awareness that a seizure can actually kill you,” Burdette said. “It’s not the seizure itself, it is more the seizure shutting down either your breathing apparatus or affecting your heart.”

Disney star Cameron Boyce died Saturday of a seizure. He was 20.

The death hit home for Moomey.

“The first time I looked it over, I was shocked. I was really upset. And I was surprised that he never said anything about it,” he said.

It made him want to work harder to raise awareness. So on July 27, he and his family will walk in the Epilepsy Stroll at Frederik Meijer Gardens & Sculpture Park, raising money for the Michigan Epilepsy Foundation.  

“Just be able to show everyone that is epileptic that they’re not alone even though it feels like it,” Moomey said.

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