Thanks to one New Jersey man, raising awareness about epilepsy could be as simple as taking a walk on the beach.
Kyle Adamkiewicz, 33, has been living with epilepsy since he was diagnosed at age 6. He now combines his love of art and the power of nature to help him overcome his epilepsy. Seizure disorders In the spotlight.
In October 2022, Adamkiewicz New Jersey ShoreSo in search of a cure, he paints and decorates shells with heartfelt messages, and he displays his creations on the seaside promenade, hoping strangers will spread the word – and the shells.
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“At first I just painted a few shells and thought no one would find them,” Adamkiewicz said in an interview with Fox News Digital.
“Then I saw people posting them online and writing lots of good, positive comments about the shells and about finding a cure for epilepsy. That just motivated me to keep making more and more.”
Kyle Adamkiewicz, pictured above, is 33 and has been living with epilepsy since he was diagnosed at age 6. He combines his love of art and the power of nature to raise awareness of the disease. (The Adamkiewicz Family)
“And now they’re traveling all over the world.”
Adamkiewicz can’t drive, so his parents, Chuck and Laurie Adamkiewicz, will drive him to drop off the shells.
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“We always have a load of shells in the car and my dad leaves them in different places, different towns,” his mother told Fox News Digital.
Adamkiewicz estimates he has painted about 1,100 shells so far.
Many have messages about finding a cure for epilepsy, but they also create designs themed around various occasions, such as Shark Week and Halloween.
Adamkiewicz has painted more than 1,000 shells so far. “Our living room is made entirely of shells and paint,” his mother joked. (The Adamkiewicz Family)
“Our living room is made entirely of shells and paint,” Adamkiewicz’s mother joked.
In addition to the hand-painted designs, each shell is engraved with Adamkiewicz’s initials, the year it was decorated, and a QR code.
Finding the shells and scanning the QR code takes you to a website that leads to Adamkiewicz’s Facebook group, Instagram account and a GoFundMe page set up to raise money to own a “seizure alarm” dog.
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There is also a link to the Epilepsy Foundation website, where you can find out what to do if you witness someone having a seizure.
“Most people don’t really know how to treat someone who’s having a seizure,” Adamkiewicz told Fox News Digital, “They just turn their back and walk in the other direction.”
In addition to the hand-drawn design, each shell is engraved with Adamkiewicz’s initials, the year it was decorated, and a QR code. (The Adamkiewicz Family)
“One in 26 people in the world have epilepsy, but it’s essentially a hidden illness that no one wants to know about.”
The Adamkiewicz family has a world map hanging on their wall and has marked with thumb tacks the locations where they’ve found shells, they told Fox News Digital.
Adamkiewicz said shells were tested in locations across the U.S., as well as Mexico City, Greece, Italy, Panama, Canada, Nova Scotia, France, South Korea and Germany.
“One in 26 people worldwide have epilepsy, but it is essentially a hidden illness.”
“People find shells and bring them to the location,” Adamkiewicz said, “and sometimes people ask me for shells to take with them when they travel.”
He’s also partnered with hospitals to involve children with epilepsy in the project, having them bring in seashells to draw their own designs.
Touching lives
As well as helping to find a cure, Adamkiewicz also aims to reduce bullying towards people with epilepsy.
Adamkiewicz is pictured here with his mother, Laurie Adamkiewicz. In April, he will undergo surgery to have a responsive neurostimulator (RNS) implanted in his brain, which will collect data on his seizure activity. (The Adamkiewicz Family)
“When I was a kid and my parents and siblings weren’t around, I was always teased at school and in the neighborhood,” Adamkiewicz said. “Kids would stare at me and make fun of me, especially right after I had a seizure.”
He continued, “I want people to know that it’s okay to be friends with someone with epilepsy.”
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He estimates that when he was in second and third grade, he was having as many as 100 seizures a day.
“This has been an incredibly difficult and lonely life for Kyle and it’s been extremely painful to watch as a mother and a father,” Laurie Adamkiewicz added.
Her goal is that the shells will help make life just a little easier for people with epilepsy and their families.
Adamkiewicz said the shell project has become a therapeutic endeavor for him. “When I’m having a really bad day, I usually do the shell project,” Adamkiewicz said. (The Adamkiewicz Family)
Adamkiewicz’s mother recalled a man who had posted his personal experience in a Facebook group.
“His son had passed away, and the man would go to the beach every morning to say good morning to his son,” she said, “and when he found the epileptic seashell, he started crying. He said it was like a gift to him.”
She added, “You never know whose life you’re impacting.”
Take Control
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 has undergone a series of brain surgeries.
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In April, he underwent surgery to have a responsive neurostimulation (RNS) device implanted in his brain, which collects data about seizure activity.
Neurosurgeon Peter Rozman, MD, performed the surgery along with Adamkiewicz’s longtime physician and mentor, Warner K. Doyle, MD.
Adamkiewicz and his mother, Laurie Adamkiewicz, are pictured here with some seashells he painted. (The Adamkiewicz Family)
“The system has the ability to actually record brain activity in the form of electrical waves that detect when a seizure is starting, and can deliver stimulation to the brain at the point where a seizure begins with the goal of terminating the seizure,” Rozman said in an interview with Fox News Digital.
Data collected by the device is sent to a neurologist, who uses the information to program the device to better capture and treat seizures, he said.
“Over time, we see the seizures get better and better,” Rozman says.
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Rozman praised Adamkiewicz’s shell project and stressed the importance of raising awareness of the disease.
“And it gives him an outlet,” the doctor said. “Having someone to talk to about his symptoms and being part of a community is very helpful.”
Each shell contains a QR code that can be scanned to access information, resources and fundraisers about epilepsy. (The Adamkiewicz Family)
In some ways, Adamkiewicz is turning epilepsy into a good thing, Rozman said.
“It’s a win-win – it raises awareness and at the same time gives Kyle more control and allows the story to develop,” he said.
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“This can be a very devastating thing to have to deal with on a daily basis, and having some permission and control over it is really important.”
Adamkiewicz agreed that the project has been a therapeutic endeavor for him.
“We want to teach people to be kind and to help each other.”
“That’s what I usually do when I’m having a really bad day,” he said.
“Today, I was painting on shells and had my earphones on and was listening to music. I was so focused on painting on the shells that I ended up distracting everyone else.”
Adamkiewicz’s shells have been found in many cities and countries around the world, including Paris, France. (The Adamkiewicz Family)
Adamkiewicz and her mother are also working on writing a children’s book to educate children more about epilepsy and what to do if a seizure occurs.
“When someone has a seizure, it can be frightening for other kids,” said mother Laurie Adamkiewicz.
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“So the goal is to spread information and eliminate the stigma against people with epilepsy. We want to teach people how to be kind and how to help.”
