(published on The Daily News)
Brooklyn family fights to pass ‘Aidan’s Law’ which would require screening newborns for rare brain disorder ALD
Elisa and Bobby Seeger’s 7-year-old son Aidan died from the horrific disease. They want to prevent other families from suffering from same hardship.
By Christine Roberts / NEW YORK DAILY NEWS
Published: Monday, September 24, 2012, 12:01 AM
Updated: Tuesday, September 25, 2012, 12:01 AM
Courtesy of Bobby and Elisa Seeger
Aidan Seeger, 7, passed away on Apr. 29, 2012 after a long and painful battle against ALD, or adrenoleukodystrophy.
The family of a Brooklyn boy who passed away from a rare brain disorder is fighting to make sure no other child faces the same fate.
Elisa and Bobby Seeger are pushing for the New York Senate to pass “Aidan’s Law,” a bill that would require the state to screen newborns for adrenoleukodystrophy – or ALD – the disease that took the life of their 7-year-old son Aidan. And the family wants both Albany and Washington, D.C. to pay attention.
“My son lived his whole seventh year, 10 months, in the hospital,” Elisa said. “I don’t want to hear of another boy suffering.”
Aidan was a first-grader at Public School 154 in Windsor Terrace when Elisa and Bobby noticed that he was struggling to read.
“Everybody just kept saying ‘nothing’s wrong,'” said Elisa, who took Aidan to a series of doctors before he was finally diagnosed with ALD, a rapidly advancing disorder that destroys nerve cells.
Aidan got a successful bone-marrow transplant at Duke University Hospital in North Carolina on his 7th birthday. But his physical and mental condition continued to deteriorate. He slowly lost his ability to see, eat and speak until he died April 29.
There is no cure for ALD, but if caught early, children can undergo a bone-marrow transplant and lead relatively normal lives.
Courtesy of Bobby and Elisa Seeger
Aidan Seeger underwent a bone marrow transplant on his seventh birthday. Pictured is Aidan with his sister Sienna, now 6.
Aidan’s Law, if passed, will add ALD to the list of more than 40 conditions New York hospitals screen for in newborns.
“This really will be a public win if you think of it in terms of what it costs to screen for ALD versus what it costs to treat,” said Amber Salzman, president of the Stop ALD Foundation.
Doctors at the Kennedy Krieger Institute estimate that the ALD screening will cost $1.50 per child or $375,000 per year in New York — “a drop in the bucket,” Elisa said.
The family — which owns the Indian Larry’s Motorcycles shop in Williamsburg — has received an outpouring of support from the nearly 20,000 members of Aidan’s Facebook page and a group dubbed “Aidan Has a Posse.” The rock band Buckcherry, model Tyson Beckford and several big-name street artists are among members.
But the determined Brooklyn mom is seeking even wider support. She took her fight for Aidan’s Law to Washington earlier this month, where a federal committee denied adding ALD to its list of recommended newborn screenings in favor of waiting until a clinical trial testing the procedure ends in Sept. 2013.
“This is human life we’re talking about it,” said Elisa. “How many children will be born with this disease by then?”
Her goal now is to sit down with New York Gov. Andrew Cuomo to have him sign the bill into law.
Gov. Cuomo’s office says they are currently reviewing the legislation.
“With this one signature, he can save these lives,” Elisa said. “The only way now to save these lives is to require newborn screening. It’s their only chance.”
Learn more about Aidan’s Law at www.thepetitionsite.com
Learn more about AIdan at www://on.fb.me/aidanseeger
‘Aidan’s Posse’ has honored Aidan with a series of artworks that have been displayed across New York City, including a massive billboard on Broadway and South 8th St. in Brooklyn.
WHAT IS ALD?
Adrenoleukodysptrophy, or ALD, is a rare genetic disorder that quickly destroys the brain. About 1 in 17,000 people in the U.S. suffer from ALD, which mainly affects males.
Nearly one-third of people with the disorder develop the childhood cerebral form that appears between ages 4 to 8.
Common symptoms of the childhood form include abnormal aggression, memory loss, hyperactivity and vision loss, according to the National Institute of Neurological Disorders and Stroke.
Death usually occurs within 1 to 10 years once symptoms surface. But if detected early, the childhood cerebral form of ALD is usually treated with a bone marrow transplant.
WHAT DO NEWBORN SCREENINGS LOOK FOR?
Newborn screening criteria varies by state.
Within days of birth, babies born in New York are tested for more than 40 conditions including blood diseases such as sickle cell anemia, infectious diseases including HIV, genetic conditions such as cystic fibrosis and potentially deadly metabolism disorders.
Other states’ screening depend on facilities and resources.
Hospitals do the tests by collecting a tiny sample of blood pricked from a baby’s heel.