Stephen’s Hulksters turns family tragedy into nonprofit action
JACKSON TWP — Less than half a year after its founding, the nonprofit Stephen’s Hulksters is already making an impact in Butler County, as over 100 children turned up to the Elevate Trampoline Park on Sunday night, Dec. 29, for a fundraiser to benefit the new organization.
To Stephen Buches Sr., the high turnout was a pleasant surprise, as the family is new to the nonprofit game.
“I was a little apprehensive about it, just because I was worried people wouldn’t come,” Buches said. “As a family, we are over the moon about the amount of people that have showed us support.”
Stephen’s Hulksters was founded by the Buches family this August in honor of their son, Stephen Jr., who died this February at the age of 8 after battling with epilepsy. The epilepsy was caused by an extremely rare mutation to the KCNQ2 gene.
Despite his short life, and the multitude of challenges that came with taking care of him, Stephen and his wife, Amy, made sure to give their son the best life possible.
“It posed a lot of challenges, developmental delays, constant care that my wife and I needed to provide for him, as well as an in-home nurse,” Buches said. “We did a lot with him, and he really motivated me to get those things done and not let his disability hold us back.”
The name “Hulksters” was inspired by a conversation between Buches and one of his two daughters which occurred on the day Stephen Jr. was born. That day, Stephen Jr. was whisked away to an intensive care area shortly after birth due to showing signs of seizure activity. It just so happened that his daughters were both fans of the Marvel Cinematic Universe.
“She asked, ‘What do we do if Stephen has to stay in there?’ And I told her, ‘We have to be strong,’” Stephen Sr. said. “And she responded with, ‘Oh, you mean like Hulk Smash?’ And we just took that and went with it.”
The goal of Stephen’s Hulksters is to help other families who are in a similar position as the Buches family was by covering needs that their insurance might pay for.
“We're very lucky to live in the state of Pennsylvania. There's a very robust health system here,” Buches said. “However, there are some things that we need, or that a special needs family might need, that aren't covered by insurance. So that's what we aim to cover.”
The location of the first fundraising event, the Elevate Trampoline Park, was symbolic, as it was one of Stephen Jr.’s favorite places to go while he was still alive.
“Trampoline parks are one of his favorite things,” Buches said. “Any time one of my children had a birthday party here, or they went to a birthday party here, I would always bounce him on the trampoline. And that's why our first event is here, because this was one of his absolute favorites.”
Already, at least one child has benefited from the Hulksters’ generosity — Remington “Remy” Bazzar, who suffers from a similar form of epilepsy as Stephen Jr. According to Remy’s mother, Maria Bazzar, his epilepsy is caused by an extremely rare genetic condition found in only five children in the entire world.
“He had brain surgery that disconnected his right hemisphere from his left hemisphere, so he only has a functioning right hemisphere. When they did that surgery, that's when they found out that he had that mutation,” Bazzar said. “He was having over 100 seizures a day. Now that they've disconnected the hemispheres, he's down to about two to four a week.”
To aid them in their daily lives, the nonprofit has bought the family a special chair which can help Remy sit up without support. Buches hopes that the money from the event will cover the costs of the chair, with enough left over to start planning for the next fundraising event.
“Right now, Remy isn't able to sit on the floor and play because he's not able to sit up on his own,” Bazzar said. “The only way he can sit is if I'm on the floor with him holding him.”
“Medical chairs like this are very expensive,” Buches said. “These can be anywhere from $800 to $1,200. And I would say the funds from this are going to cover that for them.”
