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高级阅读_30 A 14-year-old Boy with EB

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2019年08月22日

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30 A 14-year-old Boy with EB

Nothing, but nothing, is easy in the life of 14-year-old Jonathan Pitre—save for the sleep that descends on him each evening in a cloud of methadone.

Jonathan suffers from one of the most painful conditions known to medicine, Epidermolysis bullosa (EB), a rare genetic disease that causes the skin to endlessly blister, shear and scar.In severe cases such as Jonathan's, it hurts to walk, eat and bathe.

His skin is so sensitive that his body must be wrapped in gauze to protect it from the mildest friction.Even the brush of a bed sheet can cause another burn—like blister.Wounds now cover most of his body; more blisters plague his mouth and throat.

For years, Jonathan managed with Advil and imagination;he conjured dragons and demigods to help him fight through each day's pain.But none of them is magical enough now that his EB has worsened: In the past four months, his wounds have become bigger, deeper and slower to heal.

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.

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.

“I think it was the turning point in my life,” he says.“Before that, I didn't really have a meaning in my life.I didn't know what I was here for, really…I came to understand that my role in life was to help people with EB.”

Jonathan is now an EB ambassador, one of two young people who have stepped forward to educate Canadians about the disease.

DEBRA Canada is raising money for a wish campaign so that Jonathan and his fellow ambassador, Toronto's Deanna Molinaro, can fulfil one of their dreams.


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