Last July, Jonathan Pitre and his mother Tina Boileau were nominated to receive Meritorious Service Decorations (MSD) for their work in promoting awareness of epidermolysis bullosa (EB). The presentation of the honours was deferred due to COVID, and they will finally be conferred in an honouring ceremony at 2 p.m. on September 17 at Rideau Hall.
Jonathan Pitre, known as the Butterfly Child to many around the world, is remembered for choosing to make a difference. EB is a genetic disorder that causes supersensitivity in the skin, like how a butterfly’s wing is fragile and easy to damage, and it wasn’t very well-known at the time. Jonathan became a leading spokesperson and campaigner for DEBRA Canada, a charity dedicated to researching EB, to help create greater public awareness about the condition. Since his passing, Pitre’s legacy lives on in his mother, who continues his work.
He was named last July for a posthumous awarding of the Meritorious Service Cross. His mother was nominated for the Meritorius Service Medal, in recognition of "her dedication to her son's work and in carrying on Jonathan Pitre's legacy."
The citation attached to the honours, available on the Governor General of Canada’s website, reads:
“Diagnosed with epidermolysis bullosa (EB) as a newborn, Jonathan Pitre became known as the Butterfly Child and the public face of this rare, debilitating skin disorder when he bravely allowed his daily wound-care regimen to be recorded by local media. Committed to fighting the disease, he and his mother, Tina Boileau, helped raise awareness and significant funds for research, which has since led to greater support for other families affected by EB. Even though the disease eventually took Jonathan’s life, his story continues to serve as a source of inspiration to all.
The decoration awarded to the late Mr. Pitre will be received by his mother, Tina Boileau.”
The Meritorious Service Decorations were created by Her Majesty Queen Elizabeth II in 1984 to recognize exceptional deeds that bring honour to our country. Originally consisting of only the cross, and just for military actions, the medal was added in 1991 at the same time the Decorations were introduced for civilian commendation.