STAFFORD SPRINGS, CT (WFSB) — In the next installment of “Someone You Should Know,” meet a young man from Stafford Springs, who relies on his strength and sense of humor to live with a life-threatening condition.
Jonathan Gionfriddo was born with ‘Butterfly Disease,’ technically known as Epidermolysis Bullosa or EB, which is a rare condition caused by a genetic mutation.
Butterflies are among the most beautiful and captivating creatures on earth, but they are also extremely fragile. Just touching a butterfly’s wing can cause serious injury. Imagine if human skin were that fragile. Jonathan Gionfriddo doesn’t have to imagine — He knows.
His mother Brenda Gionfriddo said doctors knew something was wrong minutes after he was born.
“They knew there was a bigger problem when they tried to take blood from his heel and the skin came with it,” Brenda said.
The skin is very itchy as well, and just the slightest amount of pressure or friction will cause painful blisters, wounds, and scarring, even in the mouth and digestive system.
“I’ve had surgeries for my eyes, and I’ve had surgeries to put a tube in to feed,” Jonathan said.
There’s no treatment or cure, just salt baths that soothe, but sting a lot at first.
“Basically, it’s the worst pain you can imagine,” Jonathan said.
After that comes fresh bandages to create an “armor” from the neck to toes. And the entire painful process must be repeated every other day.
“It took a long time for me to even come to grips that I have to almost torture my child every day, in order for him to live,” Brenda said.
What’s remarkable, despite all this disease has taken from him, 20-year-old Jonathan is upbeat and positive. His secret weapon is humor.
When asked about the need to keep his body “bandaged” all the time, he joked “I’ve said to many people, in a past life, I was a mummy, wasn’t I? I was a mummy that somebody made mad.”
He went on to say, “you need to find the humor in life, that’s what a lot of comedians do.”
Jonathan is a big fan of comedian Jeff Dunham, and even has his own puppet that he brings out in public.
“It’s a great way to entertain,” he said.
Jonathan also goes to Camp Discovery, which is a week-long summer getaway for children with skin diseases, located at the Channel 3 Kids Camp in Andover.
Jonathan has grown from a nervous camper to a confident counselor.
“He’s evolved into a role model for lots of the other campers,” said Dr. Karen Wiss, who co-founded Camp Discovery.
Wiss is a pediatric dermatologist at UMass Memorial Hospital in Worcester, MA, and has been taking care of Jonathan since he was 3 years old.
“What he has been through and how upbeat and inspirational he is, it’s just pretty incredible,” Wiss said.
“It’s not something you’ll get rid of, it’s something you have to deal with, so make the most of it. Even if it’s the worst of days, you’re allowed to have bad days, trust me,” Jonathan said.
“He’s grown up so much. The way he can inspire people, I think is amazing. It makes me proud,” Brenda said.
Jonathan said he is so grateful for his mother and Dr. Wiss, who have helped him live and accept the life he has.
“I’d like to say thank you and I do say thank you. And I really mean it from the bottom of my heart,” Jonathan said.
Dr. Wiss is hopeful, one day soon, to see a treatment or maybe even a cure for EB using gene therapy.
She said there is a lot of interest now from the scientific community, thanks in large measure to Jonathan and other EB patients who have helped to raise awareness.
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