Ottawa’s ‘Butterfly Child’ Jonathan Pitre will be heading to Minnesota for a year-long medical treatment that could change his life. The 16-year-old suffers from a severe form of Epidermolysis Bullosa (EB), a rare skin disease that causes painful wounds and blistering.  

“The wounds we have on our body and blisters are considered to be third degree burns so that causes many, many problem for us of course, and one of them is our life span isn’t long – approximately 25 years,” said Pitre.

Pitre will be going to St. Jude’s Children’s Research Hospital in August where he will receive groundbreaking treatment. During his time away he will receive stem cells from his mother’s bone marrow as well as skin grafts.

“My one hope, my one wish is always been to be able to reduce some of the pain he’s having and this is probably something that can get that result,” said Tina Boileau, Pitre’s mom.

While the treatment has the potential to heal some of Pitre’s most damaged skin - it comes with severe risks. During the treatment Pitre’s immune system will be down from undergoing chemotherapy.

“Hopefully by doing this treatment I will get much better, I will still have EB, but it’ll get better,” said Pitre.

On Friday, dozens gathered for a send-off at the Falcon Ridge Golf Club, where the first annual Jonathan Pitre Golf Classic took place. The tournament raises money for the EB charity, DEBRA Canada, which will be assisting the family financially during their stay in Minnesota.

To pay for living expenses, which are not covered, the family is selling t-shirts with a butterfly symbol on the front and the words “Butterfly Effect: Small movements can change the world” on the back. The t-shirts are $20 dollars and can be purchased here.