Stories From Main Street: Saving Children From A Genetic Disorder In Williamsburg
NEW YORK (CBSNewYork) – At Indian Larry’s Motorcycle Shop in Williamsburg, past the gleaming, sleek, custom-made choppers, you will find, on the back wall, a floor-to-ceiling photograph of a young boy.
WCBS 880’s Sean Adams On The Story
Images of Aidan Seeger are everywhere in his parents’ shop.
Elisa and her Bob Seeger were blindsided last year.
“My son Aidan was diagnosed with ALD – Adrenoleukodystrophy – June 2nd, 2011,” Elisa told WCBS 880 reporter Sean Adams.
Aidan was developing just fine. He was advanced in school and he loved chess.
But then something happened.
“He was in first grade. He was having vision problems,” Elisa said.
An MRI confirmed he had ALD, which is a rare genetic disorder. One out of every 17,000 children has it. It attacks the central nervous system and the brain.
“He lost his ability to see, to hear, to walk, to talk,” Elisa said.
A stem cell transplant was too late and Aidan passed away in April of this year.
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Treatment can halt ALD, if administered before symptoms appear, which is why the Seegers are lobbying for ALD screening for newborns. Early detection is key.
“It’s not a separate blood test. Right now, New York has 51 tests. This would be 52,” Elisa said. “There’s no additional blood taken. So, it’s the same blood spot that’s taken from every newborn heel before they leave the hospital.”
She said it would cost about $1.50 per child.
New York St. Sen. Martin Golden is a co-sponsor of Aidan’s Law.
“This is one that I will fight to all extremes to make that it’s passed,” he said. “This is just, plain and simple, the right thing to do.”
“I just want to get the test added. Everyday we wait is another child that will be born with this disease. You know, they’ll be fine until one day you’ll wake up and get this horrible diagnosis,” Elisa said. “It doesn’t have to happen.”
“I wish I could have done something more for him, but my goal right now, like I said is just to help other families,” she added. “My only hope right now is to not have another child suffer that way.”