A New Jersey man says raising epilepsy awareness can be as simple as a walk on the beach.
Kyle Adamkiewicz, 33, has been living with epilepsy since he was diagnosed at age 6. epilepsy Step into the spotlight.
In October 2022, Adamkiewicz began new jersey shore, then paint and decorate them with sincere messages seeking healing. He placed his art pieces on the oceanside boardwalk, hoping they would inspire strangers to spread the word — and the shells.
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“It started out as just drawing some shells and I didn’t think anyone would find them,” Adamkiewicz said in a Fox News Digital interview.
“Then I saw people posting them online and writing a lot of positive, positive comments about the shells and finding a cure for epilepsy. That inspired me to keep making more and more stuff.”
Kyle Adamkiewicz (pictured above), 33, has lived with epilepsy since he was diagnosed at age 6. combined to help raise awareness of this disease. (Adamkiewicz Family)
“Now they’ve traveled all over the world.”
Adamkiewicz couldn’t drive, so his parents — Chuck and Laurie Adamkiewicz — drove him to place the shells.
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“We had shells in the car all the time, and he put them in different locations, different towns,” his mother told Fox News Digital.
Adamkiewicz estimates he has painted about 1,100 shells so far.
Many include information about finding a cure for epilepsy, but he also creates themed designs for various occasions such as Shark Week and Halloween.
Adamkiewicz has painted more than 1,000 shells to date. “Our whole living room is nothing but shells and paint,” Adamkiewicz’s mother joked. (Adamkiewicz Family)
“Our whole living room is nothing but shells and paint,” Adamkiewicz’s mother joked.
In addition to the hand-drawn design, each case also contains Adamkiewicz’s initials, the year he decorated the case 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 designed to help raise money to help people get “epilepsy alert” dogs.
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It also links to the Epilepsy Foundation website, where people can find out what to do if they witness someone having a seizure.
“Most people really don’t know how to deal with someone having a seizure,” Adamkiewicz told Fox News Digital. “They just turn around and walk in the opposite direction.”
In addition to the hand-drawn design, each case also contains Adamkiewiczs’ initials, the year he decorated the case and a QR code. (Adamkiewicz Family)
“One in 26 people in the world has epilepsy, but it’s basically a hidden disease that no one really wants to know about.”
The Adamkiewicz family told Fox News Digital that a map of the world hangs on the wall with push pins marking where the shells were found.
Adamkiewicz said shells were scanned in Mexico City, Greece, Italy, Panama, Canada, Nova Scotia, France, South Korea and Germany, in addition to locations across the United States.
“One in 26 people in the world has epilepsy, but it is largely a hidden disease.”
“People would find shells and bring them to those places,” Adamkiewicz said. “Sometimes people ask me for shells to take with them wherever they travel.”
He also works with hospitals to involve children with epilepsy in his projects, bringing them seashells so they can draw their own designs.
Touch life
In addition to helping find treatments, Adamkiewicz’s goals include reducing bullying of people with epilepsy.
Adamkiewicz poses with his mother, Laurie Adamkiewicz. In April, he underwent surgery to implant a responsive neurostimulation (RNS) device in his brain, which would collect data on his seizure activity. (Adamkiewicz Family)
“Growing up, I was always teased in school and in the community if my parents or brothers weren’t around,” Adamkiewicz said. “Especially after I had my seizures, kids would just stare at me and make fun of me. “
He continued, “I want people to know that it’s OK to be friends with someone who has epilepsy.”
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At one point during second and third grade, he estimated he was having 100 seizures a day.
“This has been a very difficult and lonely life for Kyle, and it’s very painful as a mother and as a father to see him,” Lauri Adamkiewicz added.
The goal, she said, is that the shells will help make life easier for people with epilepsy and their families.
Adamkiewicz said his shell project is a therapeutic endeavor for him. “If it’s a really bad day, that’s what I do,” he said. (Adamkiewicz Family)
Adamkiewicz’s mother recalled a man’s personal experience posted on a Facebook group.
“His son died and this man would go to the beach every morning to say good morning to his son,” she said. “There was still a shell of epilepsy, and he said he started crying. He said it was like a gift to him.”
She added, “You never know whose life you’re touching.”
Take control
Adamkiewicz has been a patient at NYU Langone Comprehensive Epilepsy Center, one of the largest programs in the nation, since he was 12 years old, 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 would collect data on his seizure activity.
Neurosurgeon Peter Rozman, MD, performed the surgery along with his mentor Werner K. Doyle, MD, Adamkiewicz’s longtime physician.
In the photo, Adamkiewicz and his mother, Laurie Adamkiewicz, hold some of his painted seashells. (Adamkiewicz Family)
“The system is able to actually record brain activity in the form of electrical waves to detect when a seizure begins, so it can deliver pulses to the brain at that time with the goal of aborting the seizure,” Rozman said in a report. Fox News Digital interview.
The data collected by the device is sent to neurologists, who use the information to program the device to better capture and treat epileptic seizures, he said.
“Over time, people are seeing seizures getting better and better,” Rozman said.
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Rozman praised Adamkiewicz’s shell project, stressing the importance of raising awareness about the condition.
“It also gives him an outlet,” the doctor said. “Talking to other people about your condition and becoming part of a community can be very helpful.”
Each shell contains a QR code that people can scan to access epilepsy information, resources and fundraising. (Adamkiewicz Family)
In a way, Rozman said, Adamkiewicz is turning his epilepsy into a good thing.
“It’s good for both sides – raising awareness, but also giving Kyle more control and moving the story forward,” he said.
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“It can be a devastating thing to deal with every day, and it’s important to have some kind of permission and control.”
Adamkiewicz agrees that his program is a therapeutic effort for him.
“We want to teach people how to be kind, how to help.”
“If it’s a really bad day, that’s what I do,” he said.
“Like earlier today, I was drawing some seashells, with my headphones on, and just listening to some music. I was so focused on drawing the seashells that I excluded everyone else.”
Adamkiewicz’s shells have been found in many cities and countries around the world, including Paris, France. (Adamkiewicz Family)
Adamkiewicz and his mother are also working on a children’s book to teach kids more about epilepsy and what to do if someone has a seizure.
“When someone has a seizure, other kids can get scared,” said mother Lauri Adamkiewicz.
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“So our goal is to get some information and remove the stigma around people with epilepsy… We want to teach people how to be kind and how to help.”
