This photo shows a close-up view of butterfly disease sufferer Jonathan Gionfriddo’s face
A teenager suffering with a life-threatening condition known as “butterfly disease” is refusing radical treatment – because he’s afraid he’ll die on the operating table.
Jonathan Gionfriddo, from Stafford Springs, Massachusetts, endures crippling pain due to epidermolysis bullosa (EB), which causes his skin to fall apart from within.
Doctors are urging Jonathan, who has to spend four hours a night bathing and bandaging his delicate skin, to undergo a new treatment that has drastically improved the condition of a fellow EB sufferer.
But the 17-year-old says he’s to scared to undergo surgery after a routine op left him fighting for his life.
He explained: “They (doctors) couldn’t get the breathing tube down my throat, and my lung collapsed. So they tried to get me up, and my other lung started to collapse.
“I almost died, I had a near-death experience.
“If the treatment wasn’t life-threatening, then yes I would definitely do it, but it’s just not worth the risk.”
In tonight’s The Boys With No Skin: Extraordinary People on Channel 5 at 10pm, Jonathan meets fellow EB sufferer Charlie, who drastically recovered after having the revolutionary treatment.
This photo shows the agonising extent of Jonathan’s condition, which causes his skin to fall apart from within
EB affects around one in every 50,000 people worldwide.
Jonathan said of the disease: “Its torture, mentally and physically. I’m fragile on the outside because of the skin disorder, but on the inside I’m just as weak.”
Charlie, who was abandoned at birth due to his disorder, was put forward for the revolutionary therapy five years ago by his adoptive mother Trisha Knuth.
This involved implanting a donor’s bone marrow into Charlie to release stem cells that heal the body from within.
Jonathan’s mum, Brenda, said: “Within weeks you could literally watch his skin heal. It started in his head and you could see it travelling down his body, and overnight I witnessed his skin go from tissue paper, translucent in appearance, to normal little boy skin.”
Charlie is now hoping to take part in a gene-editing trial, which, providing funding is available and the study is a success, would finally offer an EB cure.
Brenda added: “The day Jonathan was born was pretty hectic. They noticed something wasn’t right, he was missing little bit of skin here and there.
“I had people coming and saying we think he has epidermolysis bullosa. It was pretty devastating, and it was probably one of the worst days of my life, because they told me how horrible his life was going to be.
“He wouldn’t be able to eat without pain, he wouldn’t be able to walk without pain – everything was just going to be pain.”
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