‘Butterfly Boy’ Jonathan Pitre remembered on one year anniversary of his death
Posted Apr 4, 2019 12:58:00 PM.
This article is more than 5 years old.
Jonathan Pitre passed away at the age of 17 on April 4, 2018, after battling a painful blistering skin condition.
One year later and his mother is reflecting on Pitre's life and speaking out about life without him.
Tina Boileau posted this note to Facebook on Thursday:
Pitre and Boileau were in Minnesota when the teen died. He was receiving experimental stem cell treatment for Epidermolysis bullosa (EB) at the University of Minnesota Masonic Children's Hospital.
Listen to Boileau's conversation with Mark Day on 1310 NEWS' Ottawa Today:
Pitre, dubbed the Butterfly Child because his disease made his skin as fragile as butterfly wings, was a big hockey fan.
He famously became a scout for the Ottawa Senators for a day and even attended the NHL awards in 2015.
A hockey tournament is being held to raise money for DEBRA Canada, which helps families affected by EB and raises awareness for the very rare disease.
The tournament will be held at the Minto Skating Centre, 2571 Lancaster Road on Friday April 12, 2019.
