‘Butterfly boy’ Jonathan Pitre overjoyed after success of experimental treatment
He’s not completely out of the woods yet, but for the first time, Jonathan Pitre may be looking at a future free from severe pain.
The 16-year-old Ottawa resident got the news he and his family had been waiting for on Tuesday as white blood cells belonging to his mother began appearing in his body.
Pitre suffers from epidermolysis bullosa (EB), a rare but debilitating condition that makes his skin extremely fragile and prone to blistering. The bath and bandage change that he needed every two days took three to four hours to complete and would leave him exhausted.
Last fall, Pitre and his mother, Tina Boileau, travelled to Minnesota to try their luck with a dangerous and agonizing — but potentially life-altering — treatment.
As part of a clinical trial, Pitre received a stem-cell transplant with donor tissue from his mother and underwent chemotherapy that decimated his immune system and allowed the donated cells to take hold.
The hope was that his mother’s cells would establish themselves permanently in his body, begin to multiply and provide a key protein that will make his skin much more resilient.
A first attempt failed last Thanksgiving, but Pitre decided to try again. The risks were huge. Of the approximately 30 patients who have undergone the treatment for EB, eight have died from complications (mainly infection).
This time, however, it worked.
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Boileau posted an overjoyed message to Facebook on Tuesday, along with a photo of herself and Jonathan.
“Jonathan is officially growing my cells!” she wrote. “The donor study tests show he has 100 per cent my cells, which means the transplant and engraftment is working!”
Pitre’s body will also need to start producing his own blood cells, she added, to establish a “happy blend.”
“If they stay all mine going forward, he can possibly get something called Graft vs. Host disease, where my cells start taking over his organs and bodily functions (which can lead to major complications).”
Boileau warned that her son still has a long road ahead, but this week’s news has given them reason for hope.
Pitre is a huge Ottawa Senators fan, and members of the team visited him in hospital in late March. He has been watching the Senators battle for the Stanley Cup from his hospital bed in recent weeks.
Between 3,500 and 5,000 Canadians are living with some form of EB, and most die before age 30. Pitre, who was born with a particularly severe form of EB, told The Ottawa Citizen last year that without treatment, he might not live to see his 20th birthday.
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