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Helping Hands: Jackson family needs device that saves their boy from spasmatic pain

Asbury Park Press - 10/9/2021

Editor's note: This is an installment in the Asbury Park Press' "Helping Hands" series, in which we publish the stories of those at the Jersey Shore who find themselves in need and ask our readers to provide what help they can.

Last fall, Jackson resident Shannon Kulesa took her three boys to Six Flags Great Adventure. One of them, Jake, was born with cerebral palsy. Though Shannon was told he'd never walk, Jake is able to get around with a walker.

"A couple of hours go by and he collapsed," Shannon said. "He was getting spasms in his legs so bad, you could see the muscles tightening and dropping. It took five or six hours to get them stop, and it took a week to get to where he could walk without crying."

Some time later, Jake collapsed again after playing with friends.

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That's when Sharon, desperate to help her 8-year-old, borrowed a hyperbaric oxygen therapy chamber. It's a tube-shaped container roughly 8-feet long and 3-feet high, within which the lungs can gather more oxygen to enhance the body's natural healing process. The therapy can be used to treat a variety of conditions, including burns, infections and traumatic brain injuries.

From April to June, Jake spent two hours a night, five or six days per week, in the chamber.

"I started seeing so many things come out of it," Shannon said. "He was sleeping better, he was talking better, he was able to come off pain medication. There were no spasms, not a complaint about them at all."

Jake told his mother, "Mommy, do you know my back doesn't hurt anymore?"

One problem: The Kulesa family doesn't own the chamber. Eventually they had to give it back.

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The hyperbaric chamber belongs to Jim Raffone, a Manalapan resident who founded JAR of Hope — a nonprofit to research and spread awareness of Duchenne muscular dystrophy. Raffone's son Jamesy, who is now 12, began using the therapy after it was recommended by one of his doctors, Middletown-based David Dornfeld.

Because JAR of Hope has been involved in research, the Raffones actually have two chambers. They've lent the extra one to families in need; it gets passed around based on the urgency. They also use it for sampling purposes, to see how a child handles sitting inside for long stretches before their family takes the leap of purchasing one — they run for roughly $25,000.

"If the children adapt to it and the parents are comfortable, then we'll go ahead and campaign to raise the money for them," Raffone said. "Jake responded incredibly well."

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Unfortunately for Jake, Raffone had to give the chamber to a family with a more acute case over the summer.

"After Jake was not using the chamber anymore, he had to go back on pain meds, which is heartbreaking," Raffone said. "His mom and I are doing everything we can to get him a chamber."

Raffone said JAR of Hope needs about $6,000 more in donations for Jake's own chamber.

In the meantime, Jake keeps fighting.

A twin who was born 10 weeks early at a weight of 2 pounds, he was later diagnosed with PVL — infant brain damage — and cerebral palsy.

"CHOP (Children's Hospital of Philadelphia) told me he will ever walk, he will never sit up independently, and he will probably never talk," Shannon Kulesa said.

Through a combination of outside-the-box therapies and conventional care, Jake has defied those expectations.

"He does not stop talking," Shannon said.

"His walking has gotten much better," said Marykatherine Nutini, a pediatric rehab physician with Children's Specialized Hospital in Toms River. "He continues to make progress."

Such progress is costly. Although they have health insurance, the Kulesa family's out-of-pocket expenses range from $12,000 to $15,000 annually. The hyperbaric chamber is not covered at all by insurance, because it's not yet considered to be the standard of care for cerebral palsy.

Shannon Kulesa trusts her eyes. Shortly after losing access to the chamber, Jake attended a three-hour event with friends and subsequently "was on his butt Saturday night, Sunday and Monday and finished the rest of the week taking Tylenol two to three times a day," she said.

With the hyperbaric chamber's help, things are different.

"He gets to be a kid for minute," Shannon said. "It's allowing him to do things we told him he was never going to be able to do. To see him run across the yard after his brothers, to explain that feeling, I don't think it's possible. Your whole inside wants to explode."

After two major surgeries, a never-ending stream of doctors' appointments and a lot of tears, it feels like a light at the end of the tunnel.

"This is why I don't sleep," Shannon said. "This is why I have no money. This is why we gave up everything we do. This is why I don't care if people think I'm crazy for chasing outside-the-box ideas.

"Those outside-the-box ideas have made this kid run around the backyard. It's all I ever wanted for him."

EDITOR'S NOTE: Within two days of this story' posting, the fundraiser for Jake's hyberaric chamber reached the goal of $25,000. The family is now in the process of purchasing a chamber. Thank you to our readers for their generosity.

Jerry Carino is community columnist for the Asbury Park Press, focusing on the Jersey Shore's interesting people, inspiring stories and pressing issues. Contact him at jcarino@gannettnj.com.

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