STAFFORD, Conn. (AP) - On Nov. 1, Jonathan Gionfriddo did what many teenagers do to their parents- annoy them until they get what they want, in this case a trip to a Wallingford monster truck show.
Only, Jonathan isn’t any ordinary teenager. And neither he nor his mom knew that trip would change their lives.
Jonathan, 16 and a junior at Stafford High School, suffers from a severe case of epidermolysis bullosa, a rare skin disease he’s had since birth. Most people’s skin is strong enough to protect them from scratches, but Jonathan’s can blister or tear from the slightest touch or graze.
His skin doesn’t recover, either. Once it’s gone, it’s gone.
Those with EB are often called “butterfly children” as their skin is often just as fragile as the insect’s wings.
“I have no idea how someone can deal with this,” Jonathan said this week. “I was born with it. I know no other way. I don’t know what non-pain feels like.”
His mother, Brenda, said she has to go against every parental instinct and hurt her child twice a week to make him better. Jonathan requires frequent bandaging and wrapping over much of his body to ensure his safety, a grueling, painful process that can take hours.
To make matters worse, Jonathan can’t eat or drink, and as a result, can’t take medications stronger than Tylenol with codeine. He instead receives fluids and nutrition from IVs.
“It’s painful. It sucks,” he said. “I wish people could see one day in my shoes.”
Brenda is a single mother with two other children. While she drives school buses in Stafford, she said, “Taking care of Jonathan is a full-time job.”
Despite his setbacks, Jonathan is still a normal teenager. He cracks jokes nonstop with a sarcastic sense of humor and always has his stuffed panda bear, Pandy, with him. Much like other students, he doesn’t exactly love going to class.
He creates posters for every Stafford football game and leads the team onto the field every game, rain or shine. And in his free time, he does typical teenager things like browse the Internet and play “Super Mario Maker” on his Wii U, a recent Christmas present.
Jonathan’s nurse, Beth Armstrong, said her assignment to take care of him was initially only for two months, until the end of that school year. She actually fought to stay with him because of his spirit. Even in the worst of moods, “he can put a twist on your horrible day and make it funny,” she said.
Armstrong said that even when they’re working on his treatments, which can be very painful, he’s still making jokes. “We laugh so hard, people come check,” she said.
Jonathan just wants to be a normal 16-year-old, his mother said, and when he’s with his friends or having fun, he is.
But the disease takes a lot out of him. The worst moment of his life, Jonathan said, is every time he changes his bandages- in other words, every other day of his life.
For the Gionfriddos, that trip to Wallingford may have seemed like little more than a way to have fun for a few hours. They never could have expected it would change their lives for the better.
Among those on hand to meet people in the crowd that day were Harold Houston and Steve Zion, respectively the director of operations and owner of Toyota of Wallingford, the monster truck event’s sponsor.
When they saw Jonathan and his family, they walked over and introduced themselves, not knowing the seriousness of the teenager’s condition or the struggles the Gionfriddos were going through.
Jonathan isn’t an average teenager, but not just because of EB, Houston said. “You’re drawn to his infectious smile,” he said. Houston lauded Jonathan’s ability to stay positive and “find a way to make your day brighter.”
“I asked him, ’How do you deal with this?’” Houston recalled. “He said, ’I don’t know. I just do.’”
Several people had won raffles at the event to ride in one of the monster trucks, Houston continued. After meeting Jonathan, he upgraded the Gionfriddos to VIP status and allowed them to take their rides before anyone else in line.
After hearing about Jonathan’s life, and the family’s struggles, Houston and Zion decided they would help them out.
“He’s the hero, but she makes it possible for the hero to do what he needs to do,” Houston said of Jonathan and Brenda.
“You say to yourself, ’What would I do if I had a child with this situation?’” Houston said. “What do you do that makes a world a better place?”
They got to work. Brenda Gionfriddo was driving an SUV that was in poor shape, and Jonathan was riding in a wheelchair that Houston described as “barely better than a Big Y shopping cart.”
Houston stepped in quickly, getting the family a minivan and getting Jonathan better wheelchairs as fast as possible, but that was only the beginning.
Toyota of Wallingford then got in touch with WMRQ-FM, Radio 104.1, and John Fuller, president and CEO of station owner Full Power Radio, to keep the ball rolling.
At a Nov. 13 concert in Hartford featuring the rock band Panic! At The Disco, Jonathan and his family were surprise VIPs, brought on stage in front of the crowd, and the whole show was dedicated to him.
Houston said he and others were discussing what Radio 104.1 could do to help. They came up with two ideas: walk 104.1 miles for Jonathan or raise $104,100 for him. They took the latter, as walking that far would simply have taken too long, Houston said.
Thus began a massive blitz to support the Gionfriddos. Radio 104.1 ran its annual radiothon to support him and his family in December, which culminated in a two-day marathon at Toyota of Wallingford. A GoFundMe page had raised more than $57,332 as of Jan. 8- and that’s not counting thousands of material donations all over the state. A ramp at Jonathan’s home, recently installed, makes it much easier for him to get in and out on his wheelchair.
Despite the help, the Gionfriddos are still struggling. Brenda said she’s given up hope for a cure for the disease, hoping instead for a treatment for him so the family doesn’t have to worry about infections.
Even if a cure for EB does develop, the seriousness of Jonathan’s case would require several surgeries just so he could walk normally. To make matters worse, Brenda said, his case has gotten worse as he’s gotten older, and the symptoms and pain have worsened as well.
And that causes pain for Brenda and her family, too. Jonathan’s needs take up much of her time, and that strains family relationships. It’s a completely different parenting experience, she said, but “you do it because he’s your kid, and he needs you.”
The complications have made life more difficult, but Houston said he’s still fighting to improve Jonathan’s life in every way possible. He said he wants to make life for Jonathan and his family as good as it possibly can be, and there’s much more in the works to come, though he wasn’t quite ready to share details of the next steps.
“We just want to get awareness,” Houston said. When you throw a pebble in the water, the ripple spreads. Let’s throw a bunch of pebbles into the water.”
The groundswell of support that’s growing all around Connecticut is helping, too. Many of the people who hear about EB and the Gionfriddos have reached out immediately to help. Houston has too many stories to count of people giving what they can, even those with nearly nothing.
And Jonathan’s resilience only strengthens Houston’s resolve. “I’ve never seen anyone with his problems, but he has the ability to take his pain and come back, and he’s Jonathan,” Houston said.
Even when it takes nearly an hour just to complete the procedures for him to go to bed, Brenda said, at the end, he cracks a joke. That inspires Houston to continue helping in whatever way possible.
“We’re doing it because we can, because we need to, and because people need to be aware of this insidious disease,” Houston said. “We have forever. I don’t know how long forever is, but we have forever.
“Rest assured, we are going to take care of them.”
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Information from: Journal Inquirer, https://www.journalinquirer.com
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