Parents lobby states to expand newborn screening test for rare brain disorder
Originally published on October 4, 2017 10:27 pm 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…