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Jonny Kennedy’s 36-year life stands as a testament to a deep spiritual existence amid profound, chronic physical pain. His Dystrophic Epidermolysis Bullosa, a genetic condition afflicting every few hundred thousand births, meant friction would strip away any skin trying to grow back, eventually resulting in terminal cancer.

He never went through puberty. By the time he died, scarring on his hands and feet rendered his limbs useless. But his condition – “so horrible he shared his mother’s regret that she had not known to abort him” – and his consequent insights captivated the British public and helped them seek meaning on their own mortal journeys.

Alexandra Bruce

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Alexandra Bruce

Alexandra Bruce

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