29 Jun 16
June 29, 2016
Pitre and Boileau heading to U.S. for treatment
Butterflies are free
Tina Boileau, mother of Butterfly Child Jonathan Pitre, poses in her Russell backyard wearing her butterfly necklace, symbolic of her son’s condition. She is preparing for their trip to Minneapolis, where Pitre will undergo a bone marrow transplant which they hope will alleviate many of his symptoms and extend both the length and quality of his life. Vetter photo
RUSSELL — Celebrity Jonathan Pitre and his mother Tina Boileau are moving to Minneapolis, Minnesota, for about a year in order for Pitre to undergo a bone marrow transplant and series of skin grafts, with Boileau as his donor. Pitre has the very rare condition Epidermolysis Bullosa (EB or Butterfly Disease), in which his body is unable to produce the protein collagen-7, which is what binds skin, muscle and membranes together. As a result, he has experienced extreme physical pain all of his life and been highly restricted as to what activities he can participate in. He recently gained international fame by speaking out about his condition and becoming an ambassador for its understanding.
Boileau plans to be living in an apartment near the hospital where Pitre will be isolated in quarantine as his immune system is deliberately weakened with chemotherapy in order to help his body accept the bone marrow and skin transplants. She will probably start out in a long-term apartment-hotel as the apartment near the hospital is currently occupied and only available on a first-come, first-served basis. They leave on Aug. 17 and Pitre starts the series of procedures on Aug. 22.
Pitre’s sister, who is entering high school, will stay at home in Russell with their dad. “It’s important to try to maintain some kind of normal,” said Boileau, who has taken a leave of absence from her federal government employer. She feels very fortunate that she is a genetic match for her son who is expected to spend a few months in hospital then will live nearby with her and return to the hospital for daily treatments.
He will first undergo chemo then the bone marrow transplant will be done via a catheter into his heart, in order to spread it throughout his body. After the transplant has been accepted and the healing and strengthening begun, he will be given the skin grafts.
The operation carries its own risks, but Pitre’s condition has severely restricted his quality of life and he is eager to try to change that. A successful procedure means that his body will be able to produce some supply of collagen-7, which will strengthen his cells and allow healing to take place. It is the hope of his mother that he’ll be able to participate in more activities after his return from the U.S., that his pain will be significantly reduced and that his life expectancy will increase.
Most persons with EB do not live past age 25. “It’s not EB that says you live until 25,” says Boileau. “It’s the complications and side effects of the condition, as well as the malnutrition.” EB affects the entire body, including the gastrointestinal tract making digestion difficult. The disease also means being swaddled in burn bandages. Boileau changes her son’s dressings every other day—causing him hours of pain.
Now he has expressed concern about causing his mother pain, especially pain caused by the removal of some of her skin for his grafts, but she is grateful and eager to undergo it. “If I can help his wounds heal—wounds that have never healed—why not?” she asks. She said that as his mother she has longed for a way to take on some of his pain, to give him her skin instead, and now she has that opportunity. “And he doesn’t realize what it will be like for me — my skin heals.”
Boileau estimates that the costs of maintaining a residence in the U.S. plus transportation expenses (she is taking her car), and additional medical costs (the hospital stay itself is covered by Canadian insurance), plus a short visit home to maintain her visitor status and insurance are expected to cost about $200,000 USD. She is fundraising through DEBRA Canada, the charitable organization for EB. She has been president of the national organization for about three years, and was a director and vice-president prior to that. They recently put a team in the Ottawa Race Weekend, which Boileau, a runner, said was great. “Jonathan’s always wanted to be part of a team and now he did it. Other team members ran and he raced in his electric wheelchair. Crossing the finish line with everyone, it was a rush.”
Another fundraiser is the upcoming golf tournament at Falconridge on July 22. “We need some foursomes,” she says. “We’re playing best ball so you don’t have to be an elite golfer.” The event will start with a release of Monarch butterflies. “It’s symbolic. Butterflies’ wings are so delicate, but butterflies are so resilient, a lot like these kids with EB.” To register go to the DEBRA Canada website at debracanada.org.
Although apprehensive about the future and the financial burden, Boileau maintains a positive, cheerful outlook and leads a busy, productive life. “If he can wake up with a smile on his face in the morning I have no reason not to.”