PEI

Ottawa's Jonathan Pitre gets support from Island hockey team

Inspired by a recent hockey tournament involving good deeds, the Western Royals of Alberton are raising money to help a teen undergoing treatment for a rare skin disorder.

Teen with rare skin disorder focus of fundraising efforts by Alberton team

Jonathan Pitre of Ottawa suffers from epidermolysis bullosa, or EB, a painful and deadly skin disease. (Waubgeshig Rice/CBC)

A Pee Wee hockey team from Alberton, P.E.I., is helping an Ottawa teen who is afflicted with a rare disease.

The Western Regals heard about Jonathan Pitre when they were part of the recent Good Deeds Cup contest.

He's the so-called "butterfly child," known for the rare disease that leaves his skin as thin as a butterfly's wings and subject to severe blistering.

The team has decided to help by raising funds and awareness about his condition, called epidermolysis bullosa, or EB.

Jonathan and his mother, Tina Boileau, are currently in Minnesota where Jonathan has undergone a second stem cell transplant.

Alberton's Western Regals Peewee A hockey team has so far raised more than $5,400 for epidermolysis bullosa awareness. (CBC)

The Regals have raised more than $5,400 so far, and Boileau said they are very appreciative of what the team is doing.

"The outreach that's happened from across the country is just amazing," she said. "People that don't know us but have just jumped on to supporting us, has been really heartfelt. Jonathan definitely feels the love. I think that's been carrying him through this tough time he's been on. It's just been amazing."

The team is continuing its fundraising efforts, and will be holding a barbecue and fry truck this weekend, said Western Regals coach Mitch Ilsley.

They are hoping to present they money raised to Jonathan in person when he gets home, Ilsley added, along with a custom Regals jersey.

From the Island Morning interview