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Photo by Julie Oliver / Ottawa Citizen

The pain has become so hard to manage that Jonathan has advanced through Advil and Tylenol, to morphine, and now methadone.

Although the powerful opioid allows him to sleep, it has complicated his introduction to high school. The Grade 9 student at Embrun’s Catholic secondary school is trying to find a dosage that will reduce his pain but still allow him to concentrate.

“I kind of have to deal with more pain to be less tired, or more tired to have less pain,” Jonathan says of his balancing act.

Each evening, he fights to stay awake long enough to endure his bath ritual: being unwrapped; bathing in warm water, Javex and salt (the mixture attacks bacteria that can lead to infection); lancing new blisters with a pin; then being re-wrapped up to the neck in gauze. The process takes three to four hours. Jonathan will often nod with sleep as his mother, Tina Boileau, wraps his shoulders and arms.

“As soon as it’s done, I grab him and put him to bed,” Boileau says.

Photo by Julie Oliver / Ottawa Citizen

Photo by Julie Oliver / Ottawa Citizen

Photo by Julie Oliver / Ottawa Citizen

Jonathan has never known a day without pain, and for a time, he wondered about the purpose of that suffering. Then, two years ago, he went to a gathering of EB patients in Toronto sponsored by DEBRA Canada, a charity devoted to supporting those with the disease. It was the first time he had met others with EB — and it was a revelation.

“Before that, I felt alone.”

In Toronto, he found a community of fellow “warriors:” legions of EB patients enlisted in the battle against pain, depression and social isolation. They were the only young people he’s met who could understand what he faces each hour of every day.