JONATHAN PITRE, WHO DIED THIS WEEK AT THE AGE OF 17, RAISED A SMALL FORTUNE TO FIGHT THE PAINFUL DISEASE THAT BLISTERED HIS SKIN. HIS SUNNY, RED-HEADED RESILIENCE MADE HIM AN OTTAWA CELEBRITY.
‘BUTTERFLY BOY’ JONATHAN PITRE FACED HIS DISEASE WITH GRACE, ENDLESS CHEER
He found solace and strength in science fiction, and like those he read about, Jonathan Pitre had otherworldly qualities.
He had one of the most painful diseases known to medicine, epidermolysis bullosa (EB), but was defiantly happy. He couldn’t scratch without tearing his skin, but dreamed of playing hockey. Ostracized by other children, he thrived in the adult world: poised, thoughtful and genuine.
Jonathan found purpose in helping others with EB. He made himself the face of the disease, shared his story worldwide and raised a small fortune for the EB charity DEBRA Canada. His sunny, red-haired resilience charmed millions of people, and made him an Ottawa celebrity. None of it changed him.
“Jonathan’s heart is so pure and bright,” his mother, Tina Boileau, once said.
Her son, Jonathan Pitre, died Wednesday evening in a Minnesota hospital. He was 17.
Jonathan fought desperately, but he succumbed to complications from septic shock — an organ-destroying condition triggered by a rampant infection. As always, his mother was at his side.
“I can’t imagine my life without him,” she said through tears Thursday.
Jonathan had entered the University of Minnesota Masonic Children’s Hospital last week Friday when he spiked a fever. He had been battling a skin infection that resisted antibiotics for three weeks.
In the year since his stem cell transplant — an experimental procedure that held out the promise of a life without EB’s terrible burdens — he had cycled in and out of hospital with infections, fevers and nausea.
Friday’s admission sought to bring his fever under control. On Saturday, Jonathan’s blood pressure dropped, but he was still eating and in good spirits.
“We figured it was just his infection working. We had been down this path before,” Boileau said.
The following day, his blood pressure dropped again and doctors treated it with dopamine. But on Monday, Jonathan deteriorated further. His breathing became laboured, and doctors struggled to reverse the advance of sepsis.
Jonathan was moved to the intensive care unit to support his breathing, but one crisis followed another. His lungs filled with fluid and his kidneys failed. He was revived once when his heart stopped. But he still required emergency dialysis.
Unwilling to watch her son suffer anymore, Boileau had Jonathan brought back to his hospital room where he had spent much of the past year. She tucked him into bed with his favourite blankets.
He died at 8:28 p.m. Wednesday.
“He’s no longer suffering and that’s what he wanted,” Boileau said. “That’s what I wanted.”
She’s now arranging to have her son’s body flown back to Ottawa, and is planning a small, private funeral.
When he was born, late on the evening of June 2, 2000, Jonathan Pitre was perfect: There wasn’t a blemish on him.
Early the next morning, however, a doctor, puzzled by the blisters that had developed on his fingers, ordered him transferred to the Children’s Hospital of Eastern Ontario. En route to CHEO, Jonathan stopped breathing as his throat closed with blisters and swelling. An emergency intubation saved his life. For the next month, he was in an incubator as doctors investigated.
Jonathan was ultimately diagnosed with recessive dystrophic EB, a severe form of the disease that causes the skin to blister, shear and scar. Those with the disease are known as “butterfly children” because of their fragility. The family would later learn that Jonathan’s EB was the product of a random mutation: a terrible turn on the genetic wheel of fortune.
In school, Jonathan was a straight-A student yet struggled to make friends. He often watched from the sidelines as others played sports.
But his mother always engineered fun for him. She took him bicycling, go-karting, even ice-skating. Sometimes, he’d come away with giant blisters from his adventures, but never complained.
He lived in his imagination. A devoted fan of science fiction, Jonathan steeled himself against each day’s pain by conjuring dragons and demigods to aid him in his fight.
He was writing his own book of science fiction when he died.
At times during his life, Jonathan wondered about the purpose of his daily struggle. In 2012, he found an answer to that question at an EB conference in Toronto organized by DEBRA Canada. It was the first time he had ever met other children with the same disease.
“I think that was a turning point in my life,” he once told me. “Before that, I didn’t really have meaning in my life. I didn’t know what I was here for ... I came to understand that my role in life was to helppeoplewithEB.”
Jonathan became an ambassador for the charity and dedicated himself to the cause of raising awareness. In that role, I first interviewed him. He told me about his daily battle with EB and his dream of one day flying to Alaska to see the Northern Lights. He also agreed to let the Citizen’s Julie Oliver photograph him during his bath ritual — an hours-long ordeal.
Oliver captured the intimacy and agony of his bath, during which his mother unwrapped him, lanced his blisters, bandaged his wounds and rewrapped him in gauze.
Jonathan’s decision to show the world his pain fuelled an extraordinary response: Donations flooded into DEBRA Canada — more than $200,000 — and his story went viral. TSN, ESPN, People Magazine, USA Today, The Huffington Post, the Daily Mail and dozens of other media organizations interviewed him. He was made an honorary scout by the Ottawa Senators, circled a track in Montreal with Indy car driver Alex Tagliani, and delivered a speech to a thunderous ovation at WE Day.
The hockey world was particularly generous. He attended the NHL Awards ceremony in Las Vegas in a suit that Sidney Crosby had made for him in Montreal. Senators forward Kyle Turris and his wife, Julie, gave Jonathan a signed jersey. They corresponded regularly.
All the while, however, Jonathan’s disease continued its relentless march. By the time he reached Grade 10, he was in too much pain to attend school, and often fell asleep in the early evening, exhausted by his disease.
Jonathan had skin graft surgery, but it didn’t work. That left him with only one meaningful option to arrest his disease: a high-risk stem cell transplant.
Boileau convinced OHIP to cover the $1-million cost of the experimental treatment, pioneered by the University of Minnesota’s Dr. Jakub Tolar. Without it, Jonathan faced a life ever more limited by EB, and an early death. (Most people with his severe form of the disease die from an aggressive form of skin cancer in their early 20s.)
His first stem cell transplant in September 2016 failed to engraft. Although disappointed, Jonathan returned to Minnesota in February 2017 for a second attempt — and this time it took root in his bone marrow. Deep wounds on his legs, feet and back began to heal, and he talked excitedly about the prospect of coming home later this year.
More than anything else, Jonathan wanted to reunite with his dog, Gibson, his best friend. Pictures of the dog covered his hospital room. He connected with Gibson daily on FaceTime. “I tell him everything,” Jonathan explained. “He’s kind of like my therapist.”
He desperately wanted the most normal of things. Friends. Hockey. Birthday parties. Dog walks. A driver’s licence. A day without pain.
Jonathan drew strength from his mother, and viceversa. In any room, Jonathan looked for her: He always wanted to know where she was because she was the only one who understood the many ways his complex disease could harm him. Jonathan often referred to himself with the plural pronoun “we” to encompass his mother. “She does everything she can to help without any concern for herself,” he told me.
Jonathan fought for every minute of happiness, every hour of normalcy. In hospital, he told doctors in his plain, forceful way that during the day, he would rather endure pain than be muddled by opioids.
I have been honoured to chronicle Jonathan’s story for six years. Close to his 16th birthday, I asked him what made him proudest, and he spoke about how many more have become aware of EB because of his and his mother’s efforts. “I think I’m proudest of all of the things we’ve able to accomplish together,” he said. “People know more about EB now than they ever did since I was born.”
Jonathan was never well enough to travel to see the Northern Lights — part of a cosmos that forever intrigued him. He told me that he always imagined EB kids, after they died, became another light in the sky.
So tonight I’ll look to the heavens to find him: a star called Jonathan.