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,” he told CTV News Channel. “That he could educate people about EB, which is one of the most painful diseases known to mankind and nobody really knew anything about except those who suffered from it."

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.

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,” he said.

The sports anchor also took a moment to recognize Pitre’s mother for her commitment to her son.

“Her entire life, essentially, has been dedicated to Jonathan. [She] never had a vacation, never really had a day off, never wanted one because all she wanted to do was try to help him and make his life better,” he said. “It’s heartbreaking.”

 

 

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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