'First time I had seen him at peace': Jonathan Pitre's mother speaks about her loss

Tina Boileau's new mission Jonathan Pitre's Mom talks about his final days and legacy of courage, CTV's Catherine Lathem reports.

Jonathan Pitre’s mother is struggling to come to terms with losing her son, but says she is finding comfort in the fact that he is now “at peace.”

Pitre, sometimes called the “butterfly boy,” was born with epidermolysis bullosa (EB), a painful genetic disorder that causes skin to constantly tear and blister.

In between daily dressing changes, Pitre spent his time raising awareness about the disease.

Pitre’s advocacy was admired by everyone from Ottawa Senators star Erik Karlsson to Prime Minister Justin Trudeau.

He underwent an experimental stem cell transfusion at the University of Minnesota Masonic Children’s Hospital last fall and it seemed to be helping. But he returned to hospital again at the end of March for a bacterial infection, and died days later at the age of 17.

Pitre’s mother, Tina Boileau, told CTV Ottawa’s Chief News Anchor Graham Richardson in an interview on Wednesday that she was not expecting Pitre to go so quickly.

“Friday we hung out. Saturday we hung out. Sunday, things started to turn,” Boileau said.

“Even when he was transferred to (Intensive Care Unit), we’ve been down that road before ... and he’s always managed to pull through.”

“The big difference this time around is that the infection he had, the bacteria that was growing, was resistant to all antibiotics except for one,” she said.

Boileau said her son’s condition reached the point where he would not have had a good quality of life even if he had survived, so she made the very difficult decision to allow doctors to remove his breathing tube.

“We took the tube out and within a couple of minutes, he was gone,” she said. “It was the first time I had seen him at peace.”

Boileau said knowing that he was at peace gave her some comfort.

“Jonathan was born with EB. He’s never had a day without pain. And now he does,” she said.

Boileau said she will always remember her son’s sense of humour and the many laughs they had together.

“He was just fun to be around,” she said. “His belly laugh, even at 17, it was just so pure ... You’d hear it and you’d have to smile and laugh yourself.”

She also said he was dedicated to finding a cure, though his work with the charity DEBRA Canada -- work she plans to continue.

“I know that he’s touched so many people,” Boileau said. “Let’s help him further his mission to raise awareness of EB and to find a cure ... so nobody else will have to go through what he’s gone through.”