Jonathan Pitre, Ottawa’s much-loved “Butterfly Boy,” has had to cope with daily pain that few of us could endure for his entire 16 years.
And while there is considerable hardship ahead as he waits to see whether his stem cell transplant takes, at least now there is hope.
Diagnosed shortly after birth with severe form of epidermolysis bullosa (EB), the term used for a group of diseases that cause the skin to break out in sores and blisters, Jonathan recently underwent nine days of chemotherapy at the University of Minnesota Masonic Children’s Hospital in Minneapolis before receiving a bone marrow stem cell transplant last Thursday. That was followed by second round of chemotherapy to prevent complications from graft-versus-host disease.
Now he waits to see if the transplant triggers his body to begin producing new cells that can give his ravaged skin the chance to heal.
“The next three or four weeks are going to be a critical part of Jonathan’s treatment,” explains Andrew Duffy, who has told the young man’s courageous story so sensitively in the pages of the Ottawa Citizen, his words accompanied by powerful video and photographic images by Julie Oliver.
While there is no talk of curing Jonathan, stem cells are his best hope. The physician who is pioneering this treatment, Dr. Jakub Tolar, told the Citizen that the procedure comes with the possibility of “hundreds of complications” and that he “cannot promise success.” However, in the best case scenario “the change is profound.”
Tina Boileau — Jonathan’s mother, constant caregiver and stem cell donor — has a simpler goal in mind for her son: “A day without pain.”
Kids with EB are called “Butterfly Children” because their skin seems as fragile as that of a butterfly. There is currently no cure for EB. According to the U.S. Mayo Clinic, many patients with severe forms of EB die in childhood. Others often succumb to skin cancer in young adulthood.
Across Canada, people are pulling for the remarkable young man who, throughout his battles with EB, has never lost his sense of humour, or his commitment to persevere.
An avid hockey fan, Jonathan drew national media attention when he was hired for one day to scout a game for the Ottawa Senators. He’s also the subject of a compelling TSN documentary in which he explained why he chose to become an ambassador for children like him who struggle with the disease and to campaign to raise money for research: “I wanted to start helping other people with EB.”
Even while suffering the nasty after-effects of chemo, Jonathan remains upbeat. “We’re still here, obviously, and we’re still fighting — and that won’t change,” he told the Citizen on Monday.