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When Alok Tayi’s daughter was born last year, he found himself in a place no parent wants to be: a newborn intensive care unit.

His daughter had been born with respiratory and neurological issues. But she was comparatively lucky — after a surgery this spring at Boston Children’s Hospital, she’s home and healthy. That wasn’t the case for all of the newborns in the NICU. Some of the parents Tayi met were grappling with the news that their child had a rare, untreatable condition.


“One facet of being in the NICU is that you tend to spend a lot of time with families that are also in the NICU,” he said. “They all had a tremendous amount of hope that a therapy would emerge, but questioned whether it would be funded.”

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