'I'm on a magical diet': Marlboro teen's keto book gives hope to families facing epilepsy

The scar above Brandon Kopp’s right eye tells the story of how far he’s come.

Kopp was 3 years old when he suffered one of a seemingly endless series of seizures. His head struck the corner of a table in the family room of his Marlboro home, causing a gash above his eyelid.

“It was like somebody holding a string puppet just dropping the strings,” his mother Dawn Kopp recalled. “He would collapse straight down.”

That was one kind of seizure. There were others. Sometimes a hundred in a day.

“He was in such bad shape, we thought he wasn’t going to make it,” Dawn Kopp said.

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Yet here Brandon is, now 17 and a junior at Communications High School in Wall. Not only is he still around, thanks to an aggressive diet that cured his epilepsy. He’s an author, having self-published a children’s book in January about his experiences and treatment — a 40-page illustrated guide to reassure other families with epileptic children that there is hope. Proceeds from the book’s sales are benefiting Children’s Hospital of Philadelphia's dietary treatment program in the neurology division.

“It does not surprise me that he wrote something like this, to help other kids,” said Kelly Lang, Brandon’s junior-year English teacher at Communications High School. “He’s a fantastic all-around student and person.”

'Parents loved hearing his story'

Brandon’s book is titled “Krazy for Keto” and details his three-year journey (from ages 3-6) on the medically prescribed ketogenic diet for epilepsy. The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that has become widely known as a weight-loss regimen but was first developed as a treatment for pediatric epilepsy.

It’s not easy. Brandon’s parents measured out portions to the ounce. For cereal, he ate a bowl of 10 to 14 Cheerios in heavy cream instead of milk. His sister, Arielle, “ate her food in secrecy so I wouldn’t be jealous,” Brandon wrote in the book’s dedication. His parents often dressed him in a shirt that read, “please don’t feed me, I’m on a magical diet” to remind friends and family members of his strict limits.

It all paid off.

“Four days into the diet, my seizures stopped,” Brandon said.

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There were a few relapses, but he hasn’t suffered a seizure since age 4. It should be noted that this isn’t the outcome for all pediatric epilepsy patients on the keto diet, but its benefits have been well documented and the larger message — that there is a recourse — is what motivated Brandon to spread the word.

He began doing that as a 12-year-old in 2017, when he would revisit Children’s Hospital of Philadelphia — where he was a patient — and hand out “goody bags” of keto supplies while speaking with parents of children who were suffering seizures.

“Parents loved hearing his story and seeing that he turned out OK,” Dawn Kopp said.

Eventually, after fielding enough questions from parents, Brandon reached an epiphany. Why not write it all down? There was no previously published accessible material that conveyed what he could share.

“That’s kind of what led to the book,” he said. “There was this big, empty hole to fill. The book details my experience and also my family’s perspective.”

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Having an impact

Brandon didn’t have to do any of this, of course.

“I don’t know if it’s because he was sick or because he saw kids who were in bad shape in the hospital, but he just has a really good heart,” Dawn Kopp said.

Dr. Christina Bergqvist, a pediatric neurologist and director CHOP’s dietary treatment program for epilepsy and neurological disorders, has a copy of "Krazy for Keto" available for reading in her clinic’s waiting area. She also references it in educational sessions with parents of patients.

“Starting the diet is not an easy decision and it requires commitment from the families,” she wrote in an email to Brandon last week. “We cannot make anyone do the ketogenic diet. All we can do is teach them how, and provide the support. I think your book will assist families and perhaps also help siblings understand what and why their sister or brother is on this treatment.”

The book is available for purchase at Amazon.com, and early reviews have been positive.

“It’s really exciting and amazing,” Brandon said. “When I saw the first reviews coming from people I’ve never met, that’s when it really hit me — how important this was and how grateful it made me feel to have an impact, even if it’s only for a few people.”

It will impact more than a few, no doubt. And in ways he never intended. Lang, the English teacher, already plans on inviting Brandon to be a guest speaker.

“I will have him come in and talk to my classes and say, ‘Hey look, this is possible,’” Lang said. “If you see a cause and it’s something you feel passionately about, you can absolutely change people's lives. It’s just really inspiring.”

Jerry Carino is community columnist for the Asbury Park Press, focusing on the Jersey Shore’s interesting people, inspiring stories and pressing issues. Contact him at jcarino@gannettnj.com.

This article originally appeared on Asbury Park Press: Keto diet and epilepsy: Marlboro NJ teen's book shares his victory