Aidan Jack Seeger was born July 21, 2004 a big, bouncing, blue eyed baby. Aidan was walking by 9 months, met all his milestones and loved playing soccer and chess. Little did we know he had ALD (adrenoleukodystrophy) that was silently ravaging his brain. In the middle of first grade, Aidan started having some vision problems - where we thought he needed glasses. After many doctors visits and finally to a neurologist, who performed an MRI, we learned Aidan had ALD. This was June 2011. We embarked on a mission to save his life and went to the University of Minnesota - where we were told he had damage to his brain, a high Loes score, but was still eligible for a bone marrow transplant. After a second opinion at Duke University in North Carolina, we opted to stay there and Aidan was transplanted on July 21, 2011 - his 7th birthday.
Aidan lost his ability to see and shortly after lost all of his abilities. After 7 months at Duke, we transferred to NYU as this was one of Aidan's last requests - he wanted to "Go home to Brooklyn". On April 29, 2012 after 10 long months inpatient, Aidan lost his battle with ALD and our lives were forever shattered.
I promised Aidan I would fight to make sure this would not keep happening to boys across the country. Exactly 11 months to the day - March 29, 2013 - Aidan's Law was signed in New York and NY became the first state to start testing for ALD on December 30, 2013.
The fight for newborn screening continues as we try to make every state compliant with the RUSP - the Federal Recommended Uniform Screening Panel.