‘Jonathan Pitre was a hero in every sense of the word’
Prime minister among many to pay tribute to Russell teen
Tributes poured in from across the country Friday for Jonathan Pitre, whose joyful and courageous life with an unimaginably terrible disease touched millions of people.
Pitre, 17, died in a Minnesota hospital Wednesday from rapid organ failure bought on by septic shock.
He had spent almost two years in Minneapolis in pursuit of an experimental treatment for epidermolysis bullosa (EB), the corrosive skin disease that afflicted each day of his life.
Pitre was remembered for what he did in spite of that disease.
“Jonathan Pitre was a hero in every sense of the word — a courageous and determined fighter who persisted in the face of every challenge, and who inspired so many,” Prime Minister Justin Trudeau wrote on Twitter.
Ontario Premier Kathleen Wynne sent her condolences to Pitre’s family and friends: “They have lost a strong, intelligent and inspiring young man. All of Canada’s heart was warmed by Ottawa’s butterfly boy ’s strength and determination.”
Environment Minister Catherine McKenna said he “lived his life to the fullest every day with grace, humour and determination.”
In a Facebook post, Pitre’s mother, Tina Boileau, thanked the public Friday for the outpouring of love and support while issuing a plea for privacy after years in the public spotlight. Her son, she said, shared his medical journey to raise awareness about his rare, genetic disease.
“My family and I,” she said, “are now requesting your understanding in respecting our privacy as we reunite as a family to support each other in the challenging days ahead as we grieve the loss of our son, brother, grandson, and above all, fearless warrior.”
Boileau is planning a small, private funeral for her son, who was both mourned and celebrated on social media Friday.
Ottawa Mayor Jim Watson called Pitre “one of the bravest people I ever had the honour of meeting.” Ottawa police Chief Charles Bordeleau said he was “an example to many in how to live and appreciate life.” Rideau- Goulbourn Coun. Scott Moffatt said “we were all inspired by his journey and amazed by his courage.”
TSN host James Duthie spent many hours with Pitre, a dedicated sports fan who once dreamed of a career in broadcasting. Duthie gave him a seat on TSN’s hockey panel in December 2014 and later produced a documentary, The Butterfly Child, viewed by more than 11 million people.
“Jonathan was the most courageous young man I’ve ever met,” Duthie wrote Friday. “He had the toughest life imaginable, and yet always saw the positive in it, always found hope through endless pain.”
It was one of the remarkable things about Pitre: His enthusiasm and optimism could not be contained by his disease. He giggled whenever he talked about the wacky exploits of his Boston terrier, Gibson. He was a knowledgeable, passionate Senators fan. He was writing a science fiction book from his hospital bed.
Pitre didn’t like to concede anything to his disease. When you asked him how he was feeling, it was always, “I’m good.” The truth would only emerge if you persisted. Sometimes, he’d ask his mother if it was OK to relate some particularly bad piece of medical news.
He had an aw-shucks kind of heroism — quiet, honest, transparent — that allowed him to forge with the wider public an unusually powerful connection. Readers often emailed this newspaper for updates on Pitre’s condition during his medical odyssey. Stories about him were always among the most read on the paper’s website. Readers appreciated the miracle of him: that someone so fragile could fight with such ferocity.
“Jonathan Pitre, for me, is a modern Terry Fox,” said Gatineau’s Guillaume Couillard on Twitter. “What an inspiration. A true Canadian hero.”
Reader Colette Morency wrote to Tina Boileau on Facebook: “How strong you are and what a lucky boy to have had a mother like you. Thank you for sharing his life with us.”
Reader Trent Wallace said Pitre’s story was one that made him stop and appreciate the important things in life. “Take the time to live, turn up the music, dance, forget the problems around you,” he said. “The story of this young man and how he lived life to the fullest despite his grave disease reminded me of that.”
Pitre made a conscious decision to allow the public into his life. In September 2012, he met other EB children at a Toronto conference, and resolved to raise awareness about the disease and work toward a cure.
He became a tireless advocate. One of his first acts as an EB ambassador was to show Ottawa Citizen photographer Julie Oliver exactly what EB did to someone’s back and buttocks and legs and hands and feet. Those images brought into sharp relief the full measure of his courage.
It is that quality that many came back to on Friday. Said Sportsnet president Scott Moore: “In a world of sports heroes, one truly has stood out for me personally: Jonathan Pitre. He was an absolute inspiration. He met all his challenges with an incredible courage.”
Donations in Jonathan Pitre’s memory can be made to the EB charity, DEBRA Canada.
He had the toughest life imaginable, and yet always saw the positive in it, always found hope through endless pain.