Brooklyn Family, Who Lost Son To Genetic Disease, Hoping To Save Other Children

Aidan Jack Seeger (credit: Personal Photo)

Aidan Jack Seeger (credit: Personal Photo)

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Adrenoleukodystrophy,Aidan Jack Seeger, Bob Seeger, Cindy Hsu, David Greenfield, Elisa Seeger

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.

Link:

http://newyork.cbslocal.com/2012/10/11/brooklyn-family-who-lost-son-to-genetic-disease-hoping-to-save-other-children/

Met this wonderful family at Hunter's Hope Symposium in Buffalo NY this past Summer. Hoping to do something similar with our state of Pa.

Thanks John, wondering if you can help with another matter? I am an Irish citizen by birth and Mother of 2 boys with ALD. My older son David passed away Oct 8th 2006 and my younger son Sean had a BMT in 2009 at age 4. He is doing as well as to be expected with some fine motor skills loss and vision agnosia.Anyway I tried to get information on how many kids in Ireland are diagnosed each year with ALD or any statistics pertaining to this. It is like drawing blood from a stone!! I contacted health agencies by e-mail and phone and no one wants to give any information with regard to any genetic conditions over there. I have waited over a year for some of the health agencies and Drs. to get back to me and can't get any info. If you know of any members on here that have such info I would appreciate it. Thanking you in advance

great post JC!

Thanks for posting J C. Also special thanks to the Seeger family for sharing their story. The more noise we all make about this dragon the better!!
Tracey