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“It’s so hard not to be scared of it,” he said, “so I kind of engrave those reasons in my mind to give me more courage to do it. It could have been cancelled if I really wanted to … but I think of those reasons that I engraved in my memory to convince myself, and think, ‘OK, we need to do this.'”

Pitre and his mother, Tina Boileau, set off in their truck Wednesday afternoon. They’ll be driving five to six hours for the next three days with overnight stops in Espanola, west of Sudbury, and Escanaba, in northern Michigan.

Pitre will be sitting in the front passenger seat with special cushions designed to ease the pressure on his back and buttocks, where his wounds are particularly bad.

“I think I’m ready for it,” said Boileau, who has taken a year-long leave of absence from her job with the federal government. “You’re never really ready for it, but I’ve kept the mentality that we have to leave to come back.”

She’ll be living in Minnesota to care for her son, and perform the four-hour bath ritual required every second night to remove and re-apply his bandages and dressings.

Photo by Julie Oliver / Postmedia

Pitre’s disease has continued to worsen. He has spent much of the past few months in bed in an effort to allow the wounds on his back and buttocks to heal.

“It’s another notch worse than it was,” he said.

Still, Pitre has tried to spend quality time with his family and his dog, Gibson, before his departure. Last month, he hosted a charity golf tournament that raised $44,000 for the EB charity, DEBRA Canada. He has taken Gibson for long walks in his motorized wheelchair, and has spent hours rubbing the Boston terrier’s belly. “Definitely, he knows something’s up,” said Pitre.