‘Butterfly child’ dreams of the Northern Lights
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.
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(© Story courtesy of Ottawa Citizen)