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A Brooklyn Boy Who Lost A Life, But Helped Save Others

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A Brooklyn Boy Who Lost A Life, But Helped Save Others

A Brooklyn Boy Who Lost A Life, But Helped Save Others

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LINDA WERTHEIMER, HOST:

It's time for StoryCorps. Today, the family behind a law that's saving children's lives. A year ago, New York became the first state to require newborns to be screened for a deadly genetic disorder called adrenoleukodystrophy, 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, a bone marrow transplant can help them survive. The New York legislation known as Aidan's Law for Aidan Jack Seeger, who died from ALD in 2012, he was seven years old. Aiden's parents, Elisa and Bobby, remembered him at StoryCorps.

ELISA SEEGER: Aidan had curly dirty-blonde hair, giant blue eyes. 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. You know, we'd find him at 7:30 in the morning watching cartoons with a bowl of M&M's.

BOBBY SEEGER, JR.: And he'd be drinking a can of Coca-Cola. A lot of it's cute, you know. You could be pissed, and then, all of a sudden, it's like, you turn around and just be chuckling. But we didn't know that he was sick. You'd see him just sit at the kitchen table in the house with his homework. And I'd come back 30 minutes later, and he's not even done anything more than write his name.

SEEGER: He was having trouble reading, putting the book right up to his eye. And we just said, oh, he needs glasses. So we went to the pediatrician, who recommended a neurologist. The MRI came back, and the technician didn't even know what he was looking at, there was so much white matter on the brain.

JR.: How about the doctor, the one said, hey, your kid's going to die?

SEEGER: He was six and a half at the time, and we never told him that he might die. We just said we're going to get your eyes fixed. And maybe about a month into it...

JR.: No, it wasn't even a month. I remember laying on that little close-up couch and Aidan waking up going, hey, daddy, daddy, where are you? I can't see. I just climbed right into bed and cradled him. I couldn't even cry. And it wasn't long after that that everything just went.

SEEGER: His ability to walk, to eat, everything.

JR.: And then, after having not spoke or anything...

SEEGER: For about a month.

JR.: He woke up in the middle of the night. And he was just like, mommy, I want some Sprite.

SEEGER: And he drank the whole soda. I just kept saying, I don't want you to go back to sleep. But...

JR.: He never talked again. Towards the end, they had called and said his breathing was failing, you should come here. So when I walked in the room, I didn't like what I was seeing, because I didn't want to see him go through it no more. And I lay down in bed with him and had my arms, you know, holding him, telling him that he's going.

And then that was it. You know, born in Brooklyn and he died in Brooklyn. And we wanted him buried in a little cemetery...

SEEGER: That I could walk to.

JR.: It's only a couple blocks from the house and picked out a nice little spot on a hill. And it's crazy, with the cold weather, he's got the greenest, greenest spot.

WERTHEIMER: Bobby and Elisa Seeger remembering their son, Aidan Jack Seeger at StoryCorps in New York. Their conversation will be archived at the Library of Congress. Screening under Aidan's Law began in New York in January. Aidan's mom recently interviewed the parents of one of the first children to test positive for ALD since then.

You can hear that conversation on the StoryCorps podcast and at NPR.org.

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