A Windsor Terrace mother who lost her son to a rare genetic disease is traveling the country in a quest to bolster newborn screenings that could save other boys’ lives.
Elisa Seeger has made it her mission to mandate infant testing for adrenoleukodystrophy, a disorder that quickly damages the brain and adrenal glands — but can be treated when detected early enough.
Tragically, the disease wasn’t detected in Seeger’s son Aidan until he was six-and-a-half. He died just before his eighth birthday this spring.
“My focus is to spare any other family from suffering the way he did,” said Seeger, who, along with her husband Bob, owns the Indian Larry Motorcycle shop in Williamsburg. “If there had been a screening for this, we could have monitored it and treated it before it affected him.”
Aidan was a healthy first-grader until he suddenly started bumping into things and suffering from vision problems. After a visit to an eye doctor yielded no results, his parents took him to a neurologist who found white matter on a part of his brain where it didn’t belong.
Then came 10 days of chemotherapy and a bone marrow transplant at Duke University Hospital in North Carolina — one of two medical centers in the country that perform the needed procedure.
But the transplant did little to help.
“He was okay for about a month and then he lost every ability — to see, to hear, to talk, to walk,” said Seeger, who rallied friends, many of whom are bikers and artists, and started a sticker and mural campaign when Aidan fell ill. “He went to the hospital at NYU and he was never discharged.”
Aidan passed away on April 29.
New York state requires all hospitals to screen for more than 40 diseases at birth, but adrenoleukodystrophy — which can be carried by girls but only affects boys — is not one of them.
Seeger wants to change that, so she visited with state politicians, who have drafted “Aidan’s Law,” a proposed piece of legislation that would require hospitals to screen for the disease at birth.
“No family should have to suffer the loss of a child, and if there is a mechanism to prevent such deaths, we must see that it is used immediately,” said state Sen. Marty Golden (R–Bay Ridge), who is co-sponsoring the bill along with Assemblyman Jim Brennan (D–Park Slope), and state Sen. Eric Adams (D–Flatbush).
Medical experts agree the legislation could save lives.
“There is the technology out there to test for this,” said Paul Orchard, a pediatrician at the University of Minnesota who specializes in bone marrow transplants and was one of the first doctors to see Aidan after he was diagnosed. “A lot of boys go on to die of this disease who wouldn’t if we knew about it early on.”