Six years ago, doctors told Missy and Wayne Herndon their 6-year-old son had a rare genetic disorder. The boy would soon be blind, they said. Cognitive ability would go next, slowly over time. And then, probably in his teen years, Will would die.

There was no cure or even research money for Batten disease, a condition affecting fewer than 1,000 children across the world. Nothing to be done, doctors said, but wait.

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