'A fearless warrior': Ottawa's 'Butterfly Boy' Jonathan Pitre dies

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 Minnesota, 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 teach people about this disease that nobody really knew much about and didn’t get much attention and wanted to help future kids so they didn’t have to go through what he went through,” he told CTV Morning Live in Ottawa. “That was his purpose in life.”

 

 

 

 

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.

A post shared by James Duthie (@tsnduthie) on Apr 6, 2018 at 2:57am PDT

The Senators join the rest of Ottawa and mourn the loss of our special friend. He taught us what courage and resilience really is, all the while displaying his trademark enthusiasm and smile.

We'll all miss you, Jonathan.

Our sincere condolences to Tina and the entire family. pic.twitter.com/g40UsP0yLW

— Ottawa Senators 🦋 (@Senators) April 6, 2018

It was a privilege getting to know you Jonathan Pitre, thanks for sharing all of your great qualities with us all. You will always be remembered. My thoughts and prayers to Tina and the entire Pitre family.

— Erik Karlsson (@ErikKarlsson65) April 6, 2018

Very sad to hear about the passing of Jonathan Pitre. One of he bravest people I ever had the honour of meeting Rest in Peace pic.twitter.com/tiY4rG7Acx

— Jim Watson (@JimWatsonOttawa) April 6, 2018

Jonathan Pitre was the toughest kid I ever met. The last time we saw each other was just before he left for treatment in the US. He was wise beyond his years. RIP #butterflychild pic.twitter.com/GkZupxVdL4

— Stu Schwartz (@StuntmanStu) April 6, 2018