“We didn't know he was sick...”

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.

But if ALD is detected in newborns, however, a bone marrow transplant can help them survive.

The New York legislation is known as “Aidan’s Law” for Aidan Jack Seeger, who died from ALD in 2012 at the age of 7.

Aidan’s parents, Elisa and Bobby Seeger, who were instrumental in getting this legislation passed, remembered him at StoryCorps.

Just a warning: this story deals with the death of a child.

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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.

Aidan’s mom, Elisa Seeger, recently interviewed them at StoryCorps.

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Recorded in New York City, New York
For more information about Aidan's Law: click here

For more information about adrenoleukodystrophy: click here

Music Info: "The Temperature of the Air on the Bow of the Kaleetan" by Chris Zabriskie from the album Undercover Vampire Policeman
Produced by Jud Esty-Kendall, John White
Facilitated by John White
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Click here for the transcript.