A boy's daily battle fighting a rare skin disease
Warning: This article contains images that some readers may find disturbing.
Canadian Jonathan Pitre is 15 but he’s not your usual teenager. He’s what the medical community call a “butterfly child.” It might sound lovely, but the reality is brutal.
For his entire life Jonathan has suffered from a rare skin disease called epidermolysis bullosa, which makes his skin so fragile it can break off and crumble as easily as the wings of a butterfly. He has a severe case where every move he makes provokes breakage. His body is covered with blisters that pull the skin off with them when they tear.
Even the simple act of eating is arduous, since it aggravates sores in his throat. Jonathan lives in constant pain.
The teenager passionately loves hockey and though he’s tried many times, playing sports takes so much effort and so many days to recover from, that it’s simply not worth it.
Bath time is the worst. His mother Tina helps him submerge into the water and then comes the low point of every week: she has to remove his bandages one by one. There’s no way to get used to this excruciating ritual. He cries out in pain but his mother knows she has to be strong and keep going.
“I’ve had Jonathan begging me to stop,” she said, her eyes full of tears. “And I can’t.”
He understands though. “This isn’t an easy process. It’s one thing to hear about it, but it’s another to see it.”
The disease has given mother and son a truly unique relationship. “We work as a team,” Jonathan says. Once he’s out of the tub, Tina has to apply new bandages to the swollen, cracking skin. Again, he tries not to scream in agony. The whole process lasts over three hours.
For years Jonathan thought he was the only one. But in 2012 a convention was organized where he got the chance to meet other butterfly children.
“I had never known there was anyone else. Now I knew I wasn’t alone anymore,” he recalled. It inspired him to take action to help others with this condition. He testified publicly and participated in fundraising efforts, managing to raise well over $100,000. His aim was partly to build public awareness of the disease.
He also became more and more determined not to let it ruin his life. Butterfly children have a reduced life expectancy of about 30 years. And Jonathan could not be more aware of it. “I’m already past the half-way mark. That’s why you should live life to the fullest.”
In November of 2014 he got to meet players from his favorite hockey team, the Ottawa Senators. Erik Karlsson, their caption, was impressed by the boy's personality and perseverance. “You can’t touch him, but it doesn't mean he’s any different from anybody else.”
He’s even become a source of inspiration to those around him, like his sister Noémie. Jonathan doesn’t give in to despair but continues pursuing medical treatment with the hope that his condition will improve. In late 2016 he stopped radiation and chemotherapy to undergo a bone marrow transplant. The donor: his mom.
It’s a difficult surgery: first, doctors bored two holes into Tina’s hips to extract bone marrow. Then it got transfused into Jonathan’s bloodstream.
He is still in what his doctor calls “the waiting game.” They need to find out if the transplant is accepted by Jonathan’s body. If it is, then it could help considerably improve his situation.
Check out this very moving video about Jonathan’s daily life:
This boy is a force of nature. His daily battle and the extraordinary intimacy it’s created between him and his mother tells a powerful story about the will to live — inside us and on behalf of those we love.