“It is a kind of bittersweet (feeling) that he’s not here to see all the good he’s done,” Boileau said, during a phone interview.
It’s been several years now since Jonathan Pitre passed away, but the Butterfly Child, as he is known to many around the world, is remembered for his courage in dealing with a terrible disease and choosing to do something positive about his situation. Pitre suffered from epidermolysis bullosa (EB), a genetic disorder that makes a person’s skin supersensitive to touch, the way a butterfly’s wing is fragile and easy to damage.
He became The Butterfly Child, the face of EB and one of the leading spokespeople and campaigners for DEBRA Canada, to help create greater public awareness about the condition and the need for research to develop better ways to treat EB and find a final cure for it. Since he passed away, others continue to uphold Pitre’s legacy and one of his supporters is the Honourable Julie Payette, Governor General of Canada.
Pitre and his mother were both named to the list of nominations for the Governor General’s July 1 celebration of outstanding Canadians. He was named for a posthumous awarding of the Meritorious Service Cross for his efforts to promote awareness of EB and raising funds. Boileau 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.»
Jonathan’s legacy
The actual presentation of honours for Boileau and others on the July 1 list will take place at a later date. Meanwhile Boileau reflects on this latest recognition of the work by Jonathan and herself.
«There’s an immense feeling of being proud, and humbled at this,» she said, adding that there are now several «very promising» lines of research underway on EB. Clinical trials will soon begin on a couple potential treatments for the disease.
«And, oh my goodness, there is so much more awareness out there,» Boileau said. «There are other children out there suffering from this disease. Now there is a lot more research going on in the world. He (Pitre) would be pleased because he wanted to raise awareness for rare diseases.»
To the Next Generation
Boileau has an immediate answer when asked what her son might say now if he was asked for advice.
«He would let young people know that you don`t have to be an adult to get things done,» she said. `»Never give up.»
She has similar advice to both young and old.
«There are many important causes out there,» she said. «Small changes become big changes. The more people involved, the bigger the changes we can make.»
