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No boy should have a last stretch of days. But Bertrand Might lived his as well as any boy could: There was a “Star Trek” marathon with his brother and sister, sunrises on the lakeshore, and visits with family in parks, beaches, and backyards — anywhere they could safely gather during the pandemic.

His father, Matt Might, said it ended up being an unplanned farewell for 12-year-old Bertrand, whose health had always been precarious. He was the first person in the world diagnosed with a particular neurodegenerative condition that causes developmental delays, seizure-like activity in the brain, and frequent infections.

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