‘Break through that stigma’: Teen author shares epilepsy experience through children’s book

CHARLOTTE — Emery Guenther says her first seizure happened on the way home from school in 2021, at 10 years old.

“It was kind of like I had a firework in my pocket, and I didn’t know when or where it was going to go off, so it was very scary because of that,” Guenther told Channel 9’s Gina Esposito.

Now 15, her experience with an epilepsy diagnosis is told through a book she wrote, called “Sky’s Strength.”

“I decided to write a book because I was feeling very isolated when I was first diagnosed, and I was having a hard time sharing my ‘secret’ with my friends because I thought they would treat me differently because I had epilepsy. And during this time, I was sharing with my teacher that I couldn’t find my information on epilepsy at all,” Guenther said.

In the children’s book, the main character, Sky, mirrors Guenther’s real-life experiences, but through watercolor.

Guenther read a passage from the book, saying: “The next test was an EEG, which showed the activity of my brain. I thought it was pretty cool having a long rainbow wire. We tried to rhyme in the book, which is pretty fun.”

There are also tools that can help others.

“We have a page that is the calm-down strategies in here, which I actually learned when I was going through trauma therapy,” Guenther said.

Guenther has donated over 500 copies to nurses across North Carolina, and she’s read her story to over 1,000 kids in the Charlotte area.

“A lot of times, since I’ve been vulnerable with the kids, they want to start sharing their diagnosis with me, and it’s just like a safe space for kids. Anything they’re going through, they can share with me,” Guenther said.

That vulnerability led her to become a teen leader on Capitol Hill and in her community.

Esposito met Guenther at last year’s Charlotte Walk for Epilepsy, where she raised $3,000 for the Epilepsy Foundation. This year, she’ll be back, and all book proceeds will be donated.

“I just want to help break through that stigma and help kids going through the same thing I was going through,” Guenther said.

Guenther says medicine has helped her, and she been seizure-free for over four years.

That feeling of isolation is now colored in strength.

“It’s just like a rainbow of people helping me,” Guenther said.

The Charlotte Walk for Epilepsy is from 9 a.m. to noon on Sunday at McAlpine Creek Park, and Gina Esposito will be the MC. Last year, the event raised $40,000 to support epilepsy research, therapy and seizure education.

According to the American Academy of Pediatrics, epilepsy is the most common childhood brain disorder in the U.S., with about 470,000 children affected.

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