In December of 2013, New York became the first state to require newborn screening for a deadly genetic disorder called adrenoleukodystrophy, or ALD.
The disorder rapidly attacks the nervous system, mainly in young boys, and can be fatal within a year. If ALD is detected in newborns, however, a bone marrow transplant increases their chances of survival.
New York’s legislation, known as “Aidan’s Law,” is named for Aidan Jack Seeger who died from ALD in 2012 at the age of 7.
Aidan’s parents, Elisa and Bobby Seeger (pictured above), who were instrumental in getting this legislation passed, remembered their son.
Originally aired April 14, 2014, on NPR’s Morning Edition
When newborn screening under “Aidan’s Law” began, Nick and Lindsay Hunter’s son, Matthew, was one of the first to test positive for ALD.
Listen as Elisa speaks with the Hunters (pictured at left with Elisa who is holding Matthew) about what the passage of the law has meant to their family: