It’s been two weeks since the death of Jonathan Pitre, known as Ottawa’s “Butterfly Boy.”
The young man’s journey navigating his rare skin disorder captivated hearts and inspired people, from others living with his disease to the stars of professional sports.
Through it all, Jonathan’s mother, Tina Boileau, was there. She was by his side, day-in and day-out, tending to his wounds, changing his bandages, and sharing his story. Their story.
She joined Newstalk 580 CFRA’s Ottawa Now with Evan Solomon Wednesday, to discuss Jonathan’s legacy and her own life, both before Jonathan’s passing and now.
“I’m okay. It’s good to be home,” she started, “but there’s a big gap there.”
Tina and Jonathan had been in Minneapolis, Minnesota when he died on April 4, 2018. Jonathan was receiving treatment for his epidermolysis bullosa, or EB. Tina shared some of her own bone marrow for a transplant, to help Jonathan’s white blood cell count to increase. It was a treatment they hoped would help stem the tide of his blistering disease.
The first transplant didn’t work, but the second showed promising results. But it was an onset of infections claimed his life. He was only 17 years old.
“Our deal, from the get-go, was for both of us to get back,” Tina said.
“I don’t know my life without him,” she continued. “I certainly don’t know my adult life without him. I was 20 when I had him, so we grew up together. Everything that I know, I don’t know anymore. Jonathan took a lot of my days – and I will never complain about it – but that was my life.”
Tina and Jonathan were making plans to come home when the latest infection struck.
“He had so many aspirations and ambitions goals for when he got home. ‘I want to learn how to ride a bike and once I get healthy, Mom, I want have a bigger voice with the EB community because I’ll be able to,’” she said. “All these things that he’ll never be able to do. It was just such a kicker and hard to understand and say that this is all gone.”
Tina said this last infection just came out of the blue.
“He had complications from the second transplant because it worked,” she said. “He had graft versus host and to be able to treat that you need immune suppressants, so that doesn’t help fight stuff, but this infection, it was the bacteria that grew and that was difficult because it was resistant to everything but one antibiotic.”
Coming home from that took three days. She drove back alone.
“It’s what I needed,” she said. “I needed to be alone with my thoughts and with my sadness or my laughs or to talk to Jonathan and tell him he wasn’t allowed to do this. That wasn’t part of our deal. He was supposed to be my co-pilot.”
She says she chose to speak out because Jonathan would want to be talked about. He wouldn’t want to be forgotten.
That desire, to keep his memory alive, providing now a sense of direction.
“I’m just more determined now than ever to find a cure for this so that this won’t happen again,” Tina said.