In 2011, Aidan Jack Seeger was a spirited six-year-old Brooklyn boy who developed vision and concentration problems. His parents thought he just needed glasses. He was misdiagnosed several times. Eventually, doctors figured out Aidan had ALD (adrenoleukodystrophy), a mysterious and deadly brain disease. His sight went entirely, followed by his ability to walk and talk. Then, just 11 months after diagnosis, he was gone. The worst part? If the disease had been caught early, Aidan could still be alive and well today.
Today, Aidan’s parents Elisa and Bobby Seeger continue to run their custom motorcycle shop in Brooklyn, NY and raise Aidan's baby sister Sienna. But they have made it their life’s purpose to save American children from ALD. This disease afflicts 1 in 17,000 people, mostly boys and men, silently ravaging their central nervous systems. Results include blindness, deafness, seizures, progressive dementia – leading to permanent paralysis or death. But there’s a solution: newborn screening of ALD. If the disease is caught before the onset of symptoms, it can be treated and, in some cases, entirely reversed. Through the Seegers’ tireless commitment, newborn screening for ALD became law in New York State.
They are now fighting to pass “Aidan’s Law” (S. 2641 & H.R. 4692), which would require ALD screening in all 50 states. The procedure costs less than $2.50 per infant, and the price will go down as it is adopted in more states. We have no excuse not to pass this bill.
Screening of ALD requires a single drop of blood taken from a baby’s heel at birth, and costs less than a cup of coffee. (Read Aidan’s full story).