Tina Boileau, mother of late Jonathan Pitre, awarded honorary doctorate from uOttawa

Tina Boileau speaks to new graduates during a 2021 convocation ceremony after receiving an honorary doctorate degree from the University of Ottawa's Faculty of Medicine. (uOttawa/YouTube)

OTTAWA — Tina Boileau, the mother of the late Jonathan Pitre, who was known as the Butterfly Boy, has received an honorary doctorate degree from the University of Ottawa's Faculty of Medicine.

The university described Boileau as a tireless advocate for finding a cure for the rare disease that claimed her son's life.

"Tina Boileau understands that there is still much work to do to find a cure, and even more work to make this cure available. With untiring commitment and drive, she is raising awareness in order to find effective treatments that will transform epidermolysis bullosa from 'the worst disease you’ve never heard of' to 'the worst disease you’ll never hear about again because people will be cured and free from this disease.'"

Boileau shared some words about the honour on Facebook Wednesday.

"It's my deepest honour to have had the opportunity to share a few words with this body of newly graduates," she wrote. "At this point, you understand that you have the power to make a difference, so make sure to use it well. No matter the reason, your work matters!"

Boileau is the president of the non-profit group DEBRA Canada, which supports families whose children have been diagnosed with epidermolysis bullosa (EB), the rare skin condition that gave Pitre his nickname because the skin is described as being as fragile as a butterfly's wings.

In a recorded speech, Boileau encouraged graduates to use their knowledge and skills to make the world a better place.

"Medicine is one of the most respected professions in the world. Saving lives and nursing people back to health is job that has a strong sense of morality attached to it and provides professionals with immense satisfaction," she said. "During your career, you will take care of people and teach them to take care of themselves and their loved ones."

Pitre died April 4, 2018 at the age of 17.

Boileau spoke of the medical professionals who helped to care for him throughout his life.

"Jonathan and I had an amazing team of medical experts who became part of our family and definitely part of our lifeline," she said.

"Over the years, Jonathan became the son and the brother of everyone in the Ottawa region. Our openness to share with the world our ups and downs of our battle with EB gave people hope for brighter days ahead," she said, encouraging graduates to be supportive and compassionate caregivers to their patients and the broader community.

"I want to remind you to never stop learning, and never forget that your work sometimes provides an extension of life that is sometimes borrowed," Boileau said in closing. "No matter what, remember to be role models to others, be compassionate, be life changers. You are doctors and researchers. Work tirelessly in providing quality health care, go save lives, and spread the hope."