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."