Beloved Ottawa-area teenager Jonathan Pitre, who was also known as the “Butterfly Boy” for the rare skin condition he suffered from and for his inspiring outlook on life, has died.

Pitre, 17, died in hospital in Minnesota on Wednesday evening. His mother, Tina Boileau, shared the news in a heartfelt post on Facebook Friday morning.

“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. I am proud to say you did it Jonny boy!” she wrote.

Boileau thanked the public for their support during this difficult time.

“My family and I 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 a fearless warrior,” she said.

Pitre was born with epidermolysis bullosa (EB), a painful and incurable genetic disorder that caused his delicate skin to easily tear and blister. He spent the majority of his life undergoing operations and treatments, including an experimental stem cell transfusion at the University of Minnesota Masonic Children’s Hospital, to improve his quality of life.

In October, it seemed as if Pitre’s condition was improving. He was discharged from the hospital in Minneapolis, Minn. His mother wrote that her son’s skin was “healing in ways it has never before” in a Facebook post a few weeks before he was allowed to leave the hospital. The pair had been living in an apartment in Minneapolis not far from the hospital.

Pitre was admitted to the hospital on Friday for a fever, the Ottawa Citizen reported. He died from complications of septic shock, which occurs when a person’s blood pressure drops to a dangerous level from the body’s response to an infection.

In the last few years, Pitre dedicated his life to raising awareness and money to EB. TSN’s James Duthie, who developed a friendship with Pitre after meeting him when he was 14, said he believes the teenager’s determination to help others with the condition was the reason why he fought so hard to survive in the final years of his life.

“[He] wanted to show exactly what he went through, which is really painful to watch and to look at, but he wanted the world to see what this disease is like. I think really in his last few years he found his purpose in that,” Duthie said Friday. 

Pitre was an old soul with a self-deprecating sense of humour and an unmistakable “light in his eyes,” Duthie said.

 “He wasn’t your normal 14-year-old. And then you put on top of that, what he’d been through his entire life, and to never have a single moment of self-pity, to always be positive in the face of this just unimaginable pain that he had to go through every single day. He’s just one of the most extraordinary people I’ve ever met in my life.”

And, while many will remember Pitre’s courage in the face of a painful disease, Duthie said he hopes Pitre’s mother will be remembered for all that she did to care for him.

“What his mom did for him was basically sacrifice her entire life. She never had a day off, never had a vacation,” he said.

“And it’s funny, I don’t want to get hokey about how people choose each other somehow. She was the toughest mother I’ve ever seen, he’s the most courageous kid I’ve ever seen. I kind of think only two people like that could get through this for 17 years.”

Pitre’s story was shared in the award-winning TSN Original documentary “The Butterfly Child,” and he later spoke at WE Day in Ottawa. An avid hockey fan, Pitre was invited to attend the NHL award in Las Vegas wearing a custom-made suit given to him by Sidney Crosby.

But all the attention never went to Pitre’s head.

“He never wanted celebrity,” Duthie said. “What really made him proud was to be able to draw attention to the disease, to raise money for it, to educate people on a disease that nobody really knew anything about except the families that were living with it.”

And I’m thrilled he got to do that in his last few years because it really gave him purpose. And I think that brought him a lot of peace in his last months.”

Jay Wilson, a chair member for DEBRA Canada, a non-profit charity dedicated to providing support to those affected by EB, knew Pitre personally and told CTV News Channel that Pitre and his mother did a lot of work to help the organization.

“They were fantastic ambassadors for EB,” Wilson, whose two teenage sons have EB, said. “Having the endorsement through the community, through the Ottawa Senators, through Ottawa as a city for Jonathan and Tina and EB as well as DEBRA Canada, has been mind-blowing to be honest with you.”

Wilson described Pitre as the most “courageous individual” he’s ever come across. He said the teenager’s impact is obvious in the public’s response to the news of his death.

“We’ve had a great outpouring of folks offering support, offering donations. It’s been really difficult, but the silver lining is the awareness continues,” he said.

Prime Minister Justin Trudeau offered condolences to Pitre’s family on Twitter. 

“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. My deepest condolences to his mother Tina, friends and family today,” Trudeau said.

Ottawa Mayor Jim Watson told CTV News Channel that he had the honour of meeting Pitre on a handful of occasions when he was attending charitable events. He said the teenager left an indelible mark on the city and that his office has been receiving countless suggestions on how best to honour Pitre’s memory.

“I’m open to all ideas, whether it’s naming a road or an arena, starting a foundation or some other way of paying tribute to Jonathan,” Watson said. “I think it’d be wonderful to have some lasting legacy of Jonathan Pitre and what he meant to our city, what he meant to Sens fans, and what he meant to the country.”

The mayor said the city will approach Pitre’s family after they’ve had some time to grieve to see how they would like him to be remembered.

“I know he’s looking down upon us now out of pain, finally, and he’s going to be missed,” Watson said.

Despite the challenges of living with EB, Duthie said Pitre’s positive attitude put things into perspective for him.

“For him to have the courage he did, from the second he was born he was in constant pain and agonizing pain, his entire body blistered including his throat, every simple thing that we take for granted hurt him to do, including eating and drinking, and for him to never have any self-pity, to still be kind and generous and have a sense of humour was just the most remarkable thing ever.”

For more information on EB, including how to donate to help others living with the disease, visit DEBRA Canada here.

 

Jonny’s story has been made very public over the last few years as he invited you into his life and his daily struggles...

Posted by Tina Boileau on Friday, April 6, 2018
 

Our friend and inspiration Jonathan Pitre has passed away at 17. Jonathan was the most courageous young man I’ve ever met. He had the toughest life imagineable, and yet always saw the positive in it...always found hope through endless pain. His disease gave him a purpose...to help educate, and help other kids with EB. This is my favourite pic with Jonny. It was the first night I met him in person. We had heard he wanted to be a sportscaster, so he came down to TSN and joined the panel for a night. And he was a natural. Jonny was an old soul. So smart, so kind, so brave. He loved sports, loved The Flash, loved reading, especially science fiction, adored his dog Gibson. Keep his incredible Mom Tina and the rest of his family in your hearts. We will miss you bud, and never ever forget you.

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