© Julie Oliver / OTTAWA CITIZENJonathan Pitre
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.
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 Friday when he spiked a fever. He had been battling a skin infection that resisted antibiotics for three weeks.
Yet there was no reason for alarm since he had suffered a series of similar medical issues. 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. "He was all happy-go-lucky and looking forward to getting out," Boileau said.
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.
© Julie Oliver / PostmediaJonathan Pitre and his mother, Tina Boileau, in hospital in Minneapolis.
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.
© Julie Oliver / Ottawa CitizenTina Boileau and Jonathan Pitre when he was 15.
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 blood blisters from his adventures, but he never complained.
He lived in his imagination. A devoted fan of science fiction, Jonathan read widely and 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.
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