By Paula Katinas
Brooklyn Daily Eagle
New York State law requires that newborns be tested for developmental disabilities before their parents are permitted to take them home from the hospital. In fact, under state law, newborns are tested for a variety of disorders.
Now, a coalition of lawmakers, led by Councilman David Greenfield (D-Borough Park-Bensonhurst), is joining together to push for passage of a bill that would require doctors to test newborns for signs of another disease – a rare neurological disorder.
Greenfield was surrounded by a bi-partisan group of elected officials and representatives when he recently held a press conference on the steps of City Hall calling for passage of “Aidan’s Law,” a bill named in memory of Aidan Seeger, a seven-year-old Windsor Terrace boy who died earlier this year of adrenoleukodystrophy (ALD), a rare genetic condition affecting brain function.
The bill was sponsored in the last legislative session by state Sen. Eric Adams (D-Crown Heights) and Assemblyman James Brennan (D-Park Slope.). State Sen. Marty Golden (R-Bay Ridge-southern Brooklyn) is a co-sponsor. No action was taken on the bill.
Greenfield sponsored a resolution in the City Council calling on the State Legislature to pass “Aidan’s Law” in the upcoming session when it begins in January.
“We must come together to sure that this live-saving legislation is passed in Albany. My heart goes out to the Seeger family, and I will stand alongside them as they fight in Aidan’s memory to have all newborns tested for ALD. Our leaders in Albany have the power to help prevent other families from enduring this tragedy, but they must act as quickly as possible,” Greenfield said.
The lawmakers were joined at the press conference by Aidan’s parents, Elisa and Bobby Seeger.
There is no cure for ALD, which affects the brain and neurological functioning, but medical experts said a child can lead a relatively normal life with a bone-marrow transplant if the condition it is detected early enough.
“Aidan’s Law” would require that ALD be added to the list of more than 40 conditions for which all newborns are tested in New York State.
Council members Michael Nelson (D-Sheepshead Bay), Jumaane Williams (D-Flatbush) and Sara Gonzalez (D-Sunset Park) attended the press conference to support the bill.
"We have to look at the society we live in when a human life is not looked at as a priority. We need Aidan's Law to pass now, today. Every day we wait for Aidan's Law to be passed, how many children will be born with ALD and not monitored or treated to save their lives? We have the technology, the test, and the technicians to make this happen. What are we waiting for?” Elisa Seeger said.
Greenfield said he became involved in the issue after meeting with Elisa Seeger following Aidan’s death on April 29.
The Kennedy Krieger Institute estimated that ALD screening would cost $1.50 per child, according to a recent report in the New York Daily News. About 1 in 17,000 people in the US, mostly males, are affected by ALD. Nearly one-third of people with ALD begin to display symptoms such as memory loss, hyperactivity and vision loss, between ages four and eight. While death typically occurs within one to 10 years after symptoms are detected, the childhood form of ALD can be treated if detected early enough, Greenfield said.