Jonathan Pitre was known as “Butterfly Child,” as he was diagnosed with Epidermolysis bullosa, a rare disease causing his skin to blister in response to minor stimuli such as scratching or heat. The condition leaves the skin as fragile as a butterfly’s wings.
A teenager who suffers from a life-threatening condition known as ‘butterfly disease’, is refusing medication because he is afraid of dying during the treatment. He endures agonising pain every day due to epidermolysis bullosa (EB), which causes his skin to fall apart from within.
Jon endures agonising pain due to epidermolysis bullosa, which causes his skin to fall apart.
Jon, who is not expected to live past 30, said: ‘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.’
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.
EB affects around one in every 50,000 people worldwide.
Jonathan, left, with fellow sufferer Charlie, who underwent the treatment the teen is refusing to have.
The pair meet to discuss the illness on tonight’s The Boys With No Skin: Extraordinary People programme on Channel 5
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.
Fellow sufferer Charlie’s condition has drastically improved due to the risky stem-cell therapy
Meeting Charlie has motivated Jon to consider undergoing the life-threatening treatment.