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Parents Lobby States To Expand Newborn Screening Test For Rare Brain Disorder

Kerri De Nies received the news this spring from her son's pediatrician: Her chubby-cheeked toddler has a rare brain disorder.

She'd never heard of the disease — adrenoleukodystrophy, or ALD — but soon felt devastated and overwhelmed.

"I probably read everything you could possibly read online — every single website," De Nies says as she cradles her son, Gregory Mac Phee. "It's definitely hard to think about what could potentially happen. You think about the worst-case scenario."


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