Aidan Jack Seeger was a happy, healthy, spirited NY boy who, at age 6, suddenly developed vision and concentration problems. His parents thought he just needed glasses. He was misdiagnosed several times. His sight went entirely, then his ability to walk and talk. Eventually, doctors figured out that Aidan had adrenoleukodystrophy (ALD), a mysterious and deadly brain disease. Eleven months later, he was gone. The worst part? If the disease had been caught early, Aidan could still be alive and well today.
Aidan’s parents, Elisa and Bobby Seeger, have since made it their life’s work to save other children. ALD 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’ hard work and commitment, newborn screening for ALD became law in New York State.
They are now fighting to pass “Aidan’s Law” , which would fund not only ALD, but MPS1, Pompe, and SMA screening in all 50 states. Currently, it can take up to a decade or more before 50 states are testing for any disease added to the Federal Recommended Uniform Screening Panel.
Help us save our babies. Please join us in calling on Congress to pass Aidan’s Law and require newborn screening for ALL diseases approved by the federal government in all 50 states. A child's life should NOT depend on their zip code. Every baby born in this country deserves the same right to a normal, healthy life.
In eight years of ALD screening only 21 states are screening, OVER 300 babies have been diagnosed with the disease —that’s 300 lives saved. Currently, New York, Connecticut, California, Minnesota, Pennsylvania, Washington, Tennessee, Florida, Nebraska, Kentucky, Illinois, Rhode Island, Vermont, Texas, Oklahoma, Maine, Georgia, Vermont, New Hampshire, Michigan, Rhode Island, are testing for ALD. Hopefully, Maryland, Virginia, Missouri will start testing in 2021 but that leaves families in 27 states in the dark about this silent killer. We must fight for them – for their children.
Screening of MPS1, Pompe, ALD and SMA requires a single drop of blood taken from a baby’s heel at birth, and costs less than a cup of coffee per test.
Please join us in urging Congress to do the right thing, and pass “Aidan’s Law: Eradication of Death by Zip Code” funding newborn screening for ALL diseases reviewed by the Federal Recommended Uniform Screening Panel in all 50 states.