Jonathan Pitre dies from ‘the worst disease you’ve never heard of’

Jonathan Pitre, 18, of Russel, Ont., has died, his mother announced on Facebook today.

He was at the University of Minnesota to get treatment for his disease that causes severe skin blistering, according to the Ottawa Citizen newspaper.

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

His struggle was so well known in his hometown of Ottawa that when the Senators NHL team played the Wild last spring, the whole team went to the hospital to see how he was doing while waiting for stem cell transplant surgery at University of Minnesota Masonic Children’s Hospital. The stem cells came from his mom.

He was honored at the Xcel with the “let’s play hockey” task.

The team was told several days ago that their fan had died.

He was known as the “butterfly child” because his skin was as fragile as a butterfly’s wings.

“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 tweeted today.

Pitre had been in Minneapolis since last month, fighting a drug-resistant skin infection, just a month or so after it had been reported that the stem cell treatmenthad worked.

He had earlier been confined at the hospital for more than a year.

  • MrE85

    When you think your life has been difficult, think of this.

  • Gary F

    That kid has got a great attitude for such a cross to carry.

  • Jackie

    Heartbreaking for children to have to endure such difficult diseases. Just one thing to note, since it’s my field and it’s a common myth, stem cell transplant isn’t surgery. It’s an infusion, much like a blood transfusion, but with intensive treatment before and a long recovery. I’m so sorry to hear it didn’t work for this young man.

  • Guest

    Kinda makes 99% of outrage on the internet seem like small potatoes compared to REAL problems.

  • Hermann

    What a courageous young man. RIP.