Jonathan Pitre and his mother, Tina Boileau. Photo courtesy of Tina Boileau

Ottawa student overcoming odds with fundraising campaign

By 
  • February 21, 2015

TORONTO - There are plenty of things that Jonathan Pitre may not be able to do because of Epidermolysis bullosa (EB), among them shower without the risk of his skin literally peeling off. But that hasn’t stopped the 14-year-old Catholic school student from Ottawa from raising $117,000 for DEBRA Canada.

DEBRA Canada raises money to support those like Pitre suffering from EB along with those seeking to find a cure for the rare inherited connective tissue disease which causes blistering of the skin and mucous membranes as well as bone density issues. As those suffering from EB age their fragile skin becomes increasingly littered with painful scabs, open wounds and scars.

“How much money we raised for this is very impressive, we never expected anything near that by a long shot,” said Pitre, who hoped to raise between $10,000 and $15,000 when setting out on an awareness campaign in December. “It is very heartwarming to see that people want to help so much and that people are very dedicated.”

Pitre said those with EB “have to be really cautious with everything really.” “We can’t even rub our skin without wounds and there isn’t very much of that,” said Pitre, who spoke with The Register while visiting Toronto’s Hospital for Sick Children for treatment.  

Tina Boileau, Ptire’s mother and member of DEBRA’s board of directors, likened the skin of an EB patient to the wings of a butterfly.

“EB children are kind of compared to butterflies’ wings because their skin is as fragile as a butterfly’s wings,” she said. “The skin is so fragile that it just peels off at the slightest trauma. The slightest friction and it will blister. It will be like third-degree burns all over his body and that is externally and internally.”

Further complicating an already complex condition is the fact that there are more than 300 mutations of the disease, which when you consider that there are only an estimated 2,000 cases in Canada really makes putting a face to EB a challenge, said Pitre. That can make fund raising difficult.

“Cancer, so many people donate to that and with good reason, but EB is much rarer in that we aren’t as visual; not enough people know about us,” said the Grade 9 student who’s been trying to raise awareness and money since 2012 after becoming a DEBRA Canada ambassador. “There wasn’t much feed back at first because EB is so rare. This time around I don’t know what clicked or fell into place but oh wow, it has been crazy but in a good way.”

Comments (1)

  1. Janine Parrelli

You've done great work!
I have a son with RDEB. I was wondering where did you get the gloves? I've been looking for something like that for my sons hands too. Is there a website or a contact I can get in touch with?
Thank you
Janine EB mom

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