Last year, New York became the first state to require newborn screening for a genetic disorder called Adrenoleukodystrophy, or ALD. The disorder rapidly attacks the nervous system. The most common form of ALD mainly affects young boys and can be fatal within a year.
But if ALD is detected in newborns, a bone marrow transplant can help them survive. The legislation is known as "Aidan's Law" for Aidan Jack Seeger, who died from ALD in 2012 at age 7.
"Aidan had curly dirty-blond hair, giant blue eyes," his mother, Elisa Seeger, says on a visit to StoryCorps with her husband, Bobby Seeger Jr. "He always liked to be 'fancy,' as he called it — dress shirts and ties. And he had a really strong personality and he could not be told what to do."
"We'd find him at 7:30 in the morning, watching cartoons with a bowl of M&M's, and he'd be drinking a can of Coca-Cola," Elisa laughs.
Aidan's Law And The Hunter Family
When newborn screening under Aidan's Law began, Nick and Lindsay Hunter's son, Matthew, was among the first to test positive for ALD. When Lindsay first read about Aidan, she said, 'We have to find Aidan's mom and just hug her.'
Aidan's mom, Elisa Seeger, interviewed the Hunters at StoryCorps.