Greater epilepsy awareness could be as simple as a walk on the beach, thanks to one New Jersey man.
Kyle Adamkiewicz, 33, has lived with epilepsy since being diagnosed at age 6. He is now combining his love of art with the power of nature to help bring his seizure disorder into the spotlight.
In Oct. 2022, Adamkiewicz began collecting seashells from the New Jersey shore, then painting and decorating them with heartfelt messages in search of a cure. He places his works of art along the seaside boardwalks in the hopes that they will inspire strangers to spread the word — and the shells.
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“It started with just painting a few shells, and I figured no one would find them,” Adamkiewicz said in an interview with Fox News Digital.
“And then I saw people posting them online, and writing so many good and positive comments about the shells and about finding a cure for epilepsy. That motivated me to keep making more and more and more.”
“And now they have been around the entire world.”
Adamkiewicz doesn’t drive, so his parents — Chuck and Laurie Adamkiewicz — drive him to place his shells.
“We have shells with us in the car all the time, and he places them in different locations, different towns,” his mother told Fox News Digital.
Adamkiewicz estimates that he’s painted some 1,100 shells so far.
Many include messages about finding a cure for epilepsy, but he has also created themed designs for various occasions, like Shark Week and Halloween.
“Our entire living room consists of nothing but shells and paint,” joked Adamkiewicz’s mother.
In addition to a hand-painted design, each shell contains Adamkiewicz’s initials, the year he decorated it and a QR code.
When people find the shells and scan the QR code, it takes them to a website. From there, they can access Adamkiewicz’s Facebook group, his Instagram account and a GoFundMe page set up to help raise funds for people to get “seizure alert” dogs.
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It also links to the Epilepsy Foundation website, where people can learn what to do if they witness someone having a seizure.
“Most people don’t really know how to handle someone if they’re having a seizure,” Adamkiewicz told Fox News Digital. “They just turn their back and walk the opposite way.”
“One out of 26 people in the world have epilepsy, but it’s basically a hidden disease that nobody really wants to know about.”
The Adamkiewicz family has a map of the world hanging on the wall — with pushpins to mark where the shells have been found, they told Fox News Digital.
In addition to locations across the U.S., shells have also been scanned in Mexico City, Greece, Italy, Panama, Canada, Nova Scotia, France, South Korea and Germany, Adamkiewicz said.
“People will find the shells and take them to those places,” Adamkiewicz said. “And sometimes people will ask me for shells to take to wherever they are traveling.”
He’s also partnered with the hospital to get kids with epilepsy involved in his project, bringing shells in for them so they can paint their own designs.
Beyond helping to find a cure, Adamkiewicz has a goal of reducing bullying of people with epilepsy.
“When I was growing up, if my parents or brother weren’t there, I was always made fun of in school and in the neighborhood,” Adamkiewicz said. “Especially right after I had a seizure — the kids would just stare at me and make fun of me.”
He went on, “I want people to know it’s OK to be friends with someone with epilepsy.”
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At one point, during second and third grade, he estimates that he was having 100 seizures per day.
“It’s been a very hard and lonely life for Kyle, and very painful to see as a mother and father,” Laurie Adamkiewicz added.
The goal, she said, is that the shells will help to make life a little easier for those with epilepsy — and their families.
Adamkiewicz’s mother recalled a man who posted about a personal experience on the Facebook group.
“His son had passed away, and the man goes to the ocean every morning to say good morning to his son,” she said. “And there was the epilepsy shell, and he said he started crying. He said it was just like a gift to him.”
She added, “You never know whose lives you’re touching.”
Since age 12, Adamkiewicz has been a patient at NYU Langone’s Comprehensive Epilepsy Center, one of the largest programs in the nation, where he’s had a series of brain surgeries.
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In April, he underwent a procedure to implant a responsive neurostimulation (RNS) device in his brain, which will gather data about his seizure activity.
Neurosurgeon Peter Rozman, M.D., performed the surgery alongside his mentor, Werner K. Doyle, M.D., Adamkiewicz’s longtime doctor.
“This system has the capacity to actually record brain activity in the form of electrical waves that detect when the seizures start, so it can deliver an impulse to the brain at that time, with the goal of aborting the seizure,” Rozman said in an interview with Fox News Digital.
The data collected by the device is sent to the neurologist, who uses that information to program the device to better capture and treat the seizures, he said.
“Over time, people see more and more improvement in their seizures,” Rozman said.
Rozman praised Adamkiewicz’s seashell project, emphasizing the importance of increasing awareness of the condition.
“And it gives him an outlet, too,” the doctor said. “Having other people to talk about your condition with and being part of a community can be very helpful.”
In a way, Rozman said, Adamkiewicz is turning his epilepsy into a good thing.
“It’s beneficial on both sides — for raising awareness and also allowing Kyle to have more control and to drive the story,” he said.
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“It can be such a devastating thing to have to deal with on a daily basis, and having some sort of license and control over that is really important.”
Adamkiewicz agreed that his project has been a therapeutic endeavor for him.
“If it’s been a really bad day, that’s mostly what I’ll be doing,” he said.
“Like earlier today, I was painting some shells and had my ear buds in, just listening to some music. I’m just so focused on painting the shells that I zone everybody else out.”
Adamkiewicz and his mother are also working on a children’s book to teach kids more about epilepsy and what to do if someone is having a seizure.
“When someone has a seizure, it can be frightening to other children,” said Laurie Adamkiewicz mother.
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“So the goal is to get some information out there, to take the stigma away from the person who has epilepsy … We want to teach people how to be kind, and how to help.”
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