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He found solace and strength in science fiction, and like those he read about, Jonathan Pitre had otherworldly qualities.

He had one of the most painful diseases known to medicine, epidermolysis bullosa (EB), but was defiantly happy. He couldn’t scratch without tearing his skin, but dreamed of playing hockey. Ostracized by other children, he thrived in the adult world: poised, thoughtful and genuine.

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Jonathan found purpose in helping others with EB. He made himself the face of the disease, shared his story worldwide, and raised a small fortune for the EB charity, DEBRA Canada. His sunny, red-haired resilience charmed millions of people, and made him an Ottawa celebrity. None of it changed him.

“Jonathan’s heart is so pure and bright,” his mother, Tina Boileau, once said.

Her son, Jonathan Pitre, died Wednesday evening in a Minnesota hospital. He was 17.

Jonathan fought desperately to live, but he succumbed to complications from septic shock — an organ-destroying condition triggered by a rampant infection.