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“It’s so rare — it only affects 1 in 10,000 people — that prior to us starting to do this, very few people knew about it,” Dell’Unto said.

Diaz, a ninth-grader at Farmingdale High School, said he has been running for years and only got serious about it two years ago, when he joined his middle-school cross-country program. After that, he saw his finish time for 5K races drop dramatically.

“I thought, ‘You know what, I can be a fast runner. I need to do more training,’ ” he said.

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