HARWICH – Having epilepsy can mean long stays in the hospital, but comfy socks can help.
This is something Cole Strzepek knows all too well. But the last time he was at Children's Hospital in Boston, their sock supply was nearly gone, with Cole getting one of the last pairs. Soon, a plan for procuring more socks was hatched, though neither Cole nor his family had any idea just how successful it would become.
Nearly three years ago, Cole was diagnosed with intractable epilepsy after suffering a seizure, his first of many to come. The seizures can strike at any given time, and often happen more than once a day.
In August, the 12-year-old Monomoy Regional Middle School student was struck with six in 12 hours, then two more at the emergency room, for a total of eight in 24 hours, landing him in the hospital for four days. It was during this visit that Cole's mom, Erica, went in search of soothing socks, surprised to find that there were just a few pairs left, one in her son's size and a handful of toddler socks.
Mom and son were determined to change this and put together what they thought would be a small campaign to collect several hundred pairs of cool socks that would replenish the basket of Child Life Specialists, which provides games, activities, and fun distractions for kids in the hospital. To say they were successful would be an understatement.
“It's been a lot of success,” Erica said of Cole's Socks for Smiles, as the campaign was dubbed. “It's been more than we anticipated, which is really exciting.”
“I didn't think I was going to get a lot,” added Cole. “Now all my friends are getting some. I'm just proud.”
Though they were initially seeking a few hundred pairs when the campaign went live on Sept. 1, the donations now total in the thousands. Murphy's General Store in Harwich Port, with their vendor, donated 30,000 socks (yes, you read that right), and tomorrow (Oct. 4) Cole and his mother will be meeting with the Message of Hope Foundation, which partnered with Bournedale Elementary School in collecting almost 2,000 pairs, some of which will be put inside Happy Hope Bags made by Message of Hope to give to hospitalized kids across the country.
At the Harwich Community Center, director Carolyn Carey stationed a massive box for socks in the front foyer, which she said has been filled multiple times during the campaign, which ends at the end of October.
The response, said Erica, who works at the Harwich Cultural Center, has given her son's morale a serious and much-needed boost. Living with epilepsy, she said, can be challenging, especially when you're a 12-year-old boy who just wants to hang with his friends, play basketball, and not have to worry about when the next seizure might hit.
Cole has several different types, or presentations, of seizures, including generalized tonic clonic. His seizure presentation is expected to change as he ages, which means that finding the drug regimen that works can be challenging.
“You've got to find the right combination of drugs that work for you,” Erica said. “He's doing well now, but we're not sure how long it will last.”
“My seizures are almost like I have a weird feeling coming,” said Cole. “I take a deep breath, and afterwards I'm OK.”
OK, but sometimes exhausted. The epilepsy can also impact his memory and learning skills, which means having different teachers at times from his classmates, and not being allowed to play sports due to the various risks involved, neither of which Cole is a fan of.
“School can be hard. He does look neurotypical,” Erica said. “I think it can be hard for children and parents and families and school systems if you look neurotypical to really get in the mindset of how difficult epilepsy is. It's not like a seizure and you're fine. There's a lot more to it. I think trying to be community supporters of education of epilepsy awareness is important.”
In April Cole had an exploratory procedure in which 16 sEEG (a procedure that lets doctors identify where in the brain seizures originate) leads were implanted in his head for 17 days. At the time Cole held the World Record for the longest sEEG, but the experience was anything but fun, especially since it required him to be bed bound for the duration.
“I had these little things in my head,” he said. “It was boring. I wasn't allowed to get up.”
He did meet a professor from MIT who conducted a unique experiment in which he synced a movie Cole was watching, allowing for the mapping of the brain as Cole watched the film.
“It was pretty interesting to participate in that,” said Erica. “It was interesting for him, but for us as parents it was fascinating.”
Visits from teachers, friends, and even celebrities, also bolstered his spirits. During his stays at Children's he's met Rob Gronkowski and one of his brothers, and members of the New England Revolution soccer team, who were all dressed as superheroes.
Now, back in school, Cole is often approached about the sock collection, which has spread from MRMS to Harwich Elementary School, and even the Sippican Elementary School in Marion where Cole's cousins are students. Socks have even come in from the Cape Cod Chamber Orchestra.
Cole's friends are also quick to inquire about his well being.
“My friends will ask, 'Are you feeling good? Are you feeling OK?'” Cole said.
Because the number of socks collected is so immense, Erica said the family is planning multiple deliveries. They've been separating out Halloween themed socks that they'll be bringing up soon, and Erica has also been in contact with other hospitals, such as Hasbro and Mass General, to bring socks there.
“I think it's rewarding to know that we kind of did something to give back,” Erica said. “It'll be a rewarding thing that he can reflect on.”
Then there's Cole's motto, which he hopes is conveyed with each pair of socks kids slip on when they need it: “Never give up. Keep your chin up.”