Raising awareness about epilepsy could be as simple as a walk on the beach, thanks to a New Jersey man.
Kyle Adamkiewicz, 33, has suffered from epilepsy since being diagnosed at age 6. He now combines his love of art with the power of nature to help him overcome his epileptic disorder under the projectors.
In October 2022, Adamkiewicz began collecting seashells New Jersey Shorethen paints and decorates them with heartfelt messages seeking a cure. He places his artwork along seaside promenades in the hopes that it will inspire strangers to pass on the message – and the shells.
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“It all started with just painting some seashells, and I thought 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 positive comments about the shells and finding a cure for epilepsy. That motivated me to keep doing more and more.”
Kyle Adamkiewicz, pictured above and now 33, has suffered from epilepsy since being diagnosed at age 6. He combines his love of art with the power of nature to help raise awareness about his condition. (Adamkiewicz family)
“And now they’ve been all over the 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 puts them in different places, different cities,” his mother told Fox News Digital.
Adamkiewicz estimates he has painted about 1,100 shells so far.
Many include messages about finding a cure for epilepsybut he also created themed models for various occasions, such as Shark Week and Halloween.
Adamkiewicz has already painted more than 1,000 shells. “Our living room is all shells and paint,” jokes Adamkiewicz’s mother. (Adamkiewicz family)
“Our living room is just shells and paint,” jokes 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, they are taken to a website. From there, they can access Adamkiewicz’s Facebook group, his Instagram account and a GoFundMe page set up to help raise money for people to get “crisis alert” dogs.
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It also links to the Epilepsy Foundation website, where people can learn what to do if they witness a seizure.
“Most people don’t really know how to respond to someone who’s having a seizure,” Adamkiewicz told Fox News Digital. “They just turn their backs and walk in the opposite direction.”
In addition to a hand-painted design, each shell contains Adamkiewicz’s initials, the year he decorated it and a QR code. (Adamkiewicz family)
“One in 26 people worldwide suffer from epilepsy, but it is actually a hidden condition that no one really wants to hear about.”
The Adamkiewicz family has a world map hanging on their wall, with pins to mark where the shells were found, they told Fox News Digital.
In addition to the locations across the United StatesShells were also scanned in Mexico City, Greece, Italy, Panama, Canada, Nova Scotia, France, South Korea and Germany, Adamkiewicz said.
“One in 26 people worldwide suffer from epilepsy, but it is a largely hidden disease.”
“People will pick up the shells and take them to these places,” Adamkiewicz said. “And sometimes they ask me for shells to take to where they’re going.”
He also partnered with the hospital to obtain epileptic children involved in his project, bringing them shells so they could paint their own designs.
Touching Lives
In addition to helping find a cure, Adamkiewicz aims to reduce harassment of people with epilepsy.
Adamkiewicz is pictured with his mother, Laurie Adamkiewicz. In April, he underwent surgery to implant a responsive neurostimulation (RNS) device in his brain, which will collect data on his seizure activity. (Adamkiewicz family)
“When I was a kid, if my parents or my brother weren’t around, I was always being made fun of at school and in the neighborhood,” Adamkiewicz said. “Especially right after I had a seizure, kids would stare at me and make fun of me.”
He continued: “I want people to know. it’s ok to be friends with someone who suffers from epilepsy.
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At one point during the second and third years, he estimates he was having 100 seizures a day.
“It’s been a very hard and lonely life for Kyle, and very painful to watch as a mother and father,” Laurie Adamkiewicz added.
The goal, she said, is for the shells to help make life a little easier for people with epilepsy — and their families.
Adamkiewicz said his shell project has been a therapeutic experience for him. “If it’s been a really bad day, that’s what I usually do,” he said. (Adamkiewicz family)
Adamkiewicz’s mother remembers a man who posted a personal experience on the Facebook group.
“His son had died, and the man go to the ocean “He was there 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 like a gift to him.”
She added: “You never know who you’re talking to.”
Take control
Since the age of 12, Adamkiewicz has been a patient at NYU Langone Comprehensive Epilepsy Center, one of the largest programs in the country, where he underwent a series of brain surgeries.
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In April, he underwent surgery to implant a responsive neurostimulation (RNS) device in his brain, which will collect data on his seizure activity.
Dr. Peter Rozman, neurosurgeon, performed the operation alongside his mentor, Dr. Werner K. Doyle, Adamkiewicz’s longtime physician.
Adamkiewicz and his mother, Laurie Adamkiewicz, are pictured with some of his painted shells. (Adamkiewicz family)
“This system has the ability to record brain activity in the form of electrical waves that detect the onset of seizures, so that an impulse can be delivered to the brain at that moment, with the aim of interrupting the seizure,” Rozman said in an interview with Fox News Digital.
The data collected by the device is sent to the neurologist, who uses this information to program the device to better capture and treat criseshe said.
“Over time, people see more and more improvement in their seizures,” Rozman said.
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Rozman praised Adamkiewicz’s shellfish project, stressing the importance of raising awareness about the disease.
“And it also gives him an outlet to express himself,” the doctor said. “Having other people to talk to about his illness and being part of a community can be very helpful.”
Each shell contains a QR code that a person can scan to access information, resources and fundraising for epilepsy. (Adamkiewicz family)
In a way, Rozman said, Adamkiewicz is turning his epilepsy into a good thing.
“It’s a win-win: it raises awareness and also allows Kyle to have more control and drive the story,” he said.
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“It can be such a devastating thing to deal with on a daily basis, and having some kind of license and control over that is really important.”
Adamkiewicz agreed that his project was a therapeutic effort for him.
“We want to teach people to be kind and to help.”
“If it’s been a really bad day, that’s usually what I do,” he said.
“As earlier in the day I was painting seashells and had my headphones in my ears, I just listen to music. I’m so focused on painting the shells that I’m driving everyone crazy.
Adamkiewicz shells have been found in many cities and countries around the world, including Paris, France. (Adamkiewicz family)
Adamkiewicz and his mother also work on a children’s book to teach children more about epilepsy and what to do if someone has a seizure.
“When someone has a seizure, it can be scary for other children,” said Laurie Adamkiewicz, the child’s mother.
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“So the goal is to spread information, to end the stigma of people with epilepsy… We want to teach people to be kind and to help.”
