A Canadian teenager who inspired many in his fight to overcome a rare, severe skin disease — and to spread awareness to help other kids like him — died in Minneapolis on Wednesday.
The mother of Jonathan Pitre announced his death in a Facebook post Friday morning that mourned his loss but celebrated the achievements he reached despite the crippling effects of epidermolysis bullosa (EB), a painful, incurable disorder that causes skin to tear and blister.
“Jonny’s story has been made very public over the last few years as he invited you into his life and his daily struggles with EB as he tirelessly fought to raise awareness for this horrific disease,” wrote his mother, Tina Boileau. “I am proud to say you did it, Jonny boy!”
Pitre, 17, received two experimental transplants at the University of Minnesota over the past two years. The goal was to infuse his body with donor stem cells to produce collagen, a protein that binds skin cells together and is lacking in people with EB.
The university is a world leader in this type of transplant; doctors there had recently reported success in isolating the stem cells that would be most therapeutic.
In an interview last year, Boileau had described signs of progress in her son, whose perpetual wounds across his back had appeared to be healing and scabbing.
She had discussed with doctors the possibility of returning home to Ottawa. But Pitre also had frequent complications, mostly fevers and infections that would force him back into the hospital.
The Ottawa Citizen newspaper, which had closely followed Pitre’s progress in Minneapolis, reported that the teen was most recently admitted to the hospital on March 30. He had been battling a drug-resistant skin infection for three weeks, the newspaper reported.
A special place in the NHL
An avid hockey fan, Pitre was embraced by his hometown Ottawa Senators, and made the “Let’s play hockey!” announcement at a Minnesota Wild game last year. The Senators, who at one point had issued Pitre a ceremonial contract adding him to the scouting staff, issued a statement Friday to “mourn the loss of our special friend.”
“He taught us what courage and resilience really is, all the while displaying his trademark enthusiasm and smile,” the statement read.
‘One of the most remarkable’
Pitre was nicknamed the Butterfly Boy because of the fragility of his skin. Pitre and his mother have been public advocates regarding his disease — befriending other children with EB and posting pictures of Jonathan’s wounds and progress to educate others.
Pitre had developed a friendly relationship with his transplant physician, Dr. Jakub Tolar, who is now dean of the U’s School of Medicine. The two spent hours discussing science fiction and a book that Pitre was writing, but also the real-life frustrations of seeing the transplant against EB work, but cause complications.
Tolar called Pitre “one of the most remarkable patients I have ever known” and said the teen’s courage has inspired him to redouble his research efforts to fight transplant-related infections.
“He was mature enough … to have a very intellectual and complex conversation about this and just seeing things through his eyes was a tremendous lesson to me and a gift,” Tolar said. “It was an honor to be a part of” his life.