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.
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.
Click here for the transcript.
Bobby Seeger, Jr (BS): 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 um, 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, you know, thirty minutes later and he's not done anything more than just write his name.
ES: 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.
BS: How about the doctor, the one that said it, "Hey, your kid is going to die."
ES: He was 6 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.
BS: 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.
ES: His ability to walk, to eat--everything.
BS: And then uh, after having not spoke or anything for...
ES: For about a month.
BS: He woke up in the middle of the night, and he was just like, "Mommy, I want some Sprite."
ES: And he drank the whole soda. I just kept saying, "I don't want you to go back to sleep." But um…
BS: 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 seen because I didn't want him to go through it no more. And I lay down in bed with him and had my arms holding him, you know, telling him that he's going.
And then that was it. You know, born in Brooklyn and he died in Brooklyn.
And uh, we wanted him buried in a little cemetery…
ES: That I could walk to.
BS: …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.