NEW YORK (CBSNewYork) — A New York City couple who recently lost their 7-year-old son to a rare disease is on a mission to save other children.
Aidan Jack Seeger was a typical little boy, who showed no signs of any medical problems.
But he started having problems with his eyes.
“For Aidan, it was vision problems, that’s how it started, but it’s often misdiagnosed because even as parents we just thought he needed glasses,” Aidan’s mother, Elisa Seeger, told CBS 2’s Cindy Hsu on Thursday.
From eye doctors to a neurologist, no one could figure out what was wrong until an MRI uncovered that Aidan had a rare genetic disease that effects the brain called Adrenoleukodystrophy or ALD.
“If he would’ve been diagnosed at birth, we could’ve monitored him and he could’ve had a transplant before any of his symptoms were there, and he could be here right now with us,” Elisa Seeger said.
If ALD is caught before the symptoms start to show, it can often be treated, doctors said.
But for Aidan, it was too late.
After undergoing a bone marrow transplant and chemotherapy, he passed away in April at 7 years old. His family and his supporters, called “Aidan’s Posse,” are now on a mission to save other children with “Aidan’s Law.”
It would add ALD to the more than 40 other conditions that every newborn is tested for in New York State. Supporters took to the steps of City Hall on Thursday to push for the simple blood test that would cost less than $2 a child.
“If we would’ve spent $1.50, I mean it’s just shocking. I spend more on a cup of coffee every morning. For $1.50 we could save lives in New York State. It doesn’t make any sense,” City Councilman David Greenfield said.
“It’s not like we’re concerned about our son anymore because we did everything that we possible could, it’s our neighbor, it’s the people we don’t know, it’s the people we’re going to meet,” said Aidan’s father, Bob Seeger.
The Seegers are hoping Aidan’s Law will soon pass in New York State and then go nationwide.
More than 200 children are born in the United States with ALD every year and while girls can be carriers, it’s fatal in boys.
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