The FIRST Annual Philly Aidan’s Run

​In late March, early April of 2011, Aidan’s 1st Grade school year, he started having some vision problems. He started reading and writing with his head very close to the table. Having no other behavior issues, we just assumed he needed glasses. We took Aidan to our opthamologist who said he had 20/20 vision. We then took Aidan to a pediatric opthamologist who also told us he had 20/20 vision and “sometimes children do this as they are just learning how to read and write”. This would make sense if it were the beginning of the school year, but it was close to the end of the year and prior to this Aidan had been doing really well in school.
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The next suggestion was a retina specialist who did recognize something was wrong, but didn’t know what it was. Back to our pediatrician who suggested a visit to the neurologist. At the appointment with the neurologist, the doctor spent a lot of time doing a physical check up: asking Aidan questions, asking him to run up and down the hall, touch his nose, etc After about an hour the doctor said “I don’t think anything is wrong with him, but let’s get an MRI to make sure.”June 2, 2011 that was the day our lives were forever changed as we were told our son had a disease called ALD, there was no cure and that he only had a few months to live.This began our journey for the quest to save our son’s life from a disease we had never heard of. The next week we were on a plane to Minnesota where the diagnosis was confirmed and the work up began to see if Aidan was eligible for a bone marrow transplant. I remember falling to the ground as we got the phone call that, YES, Aidan was eligible for transplant and the hope was this would save his life and stop the progression of the disease.We came back home to Brooklyn waiting for a bone marrow match and the date when he would receive his transplant. We wanted a 2nd opinion and we had the chance to go to Duke in North Carolina, the only other hospital in the country with experience in ALD. On July 4, 2011 we drove down to North Carolina as a family and this is where we stayed.Aidan went through 10 days of chemotherapy and received his 5/6 cord blood transplant on July 21, 2011 also his 7th Birthday and little more than 1 month after first hearing the word adrenoleukodystrophy.The following months were grueling and Aidan lost all of his abilities in one night. He was walking, talking and eating the night before and the next morning he was unresponsive. After ruling out Sepsis, the doctors believed his condition to be PRES (Posterior Reversible Encephalopathy Syndrome), a common occurrence when taking anti-rejection medications. As the doctors changed his medication to hopefully reverse this condition, Aidan never fully regained his abilities. Except for one unexplainable night about one month from losing everything, Aidan woke up at 2:00 AM sat up, asked to drink soda, was talking and moving and fully cognitive. He went back to sleep and was never to be “himself” again.

After 7 months at Duke University we were transferred to NYU so we could hopefully move Aidan back home.

We spent 3 months in NYU with a series of complications, although Aidan was 99% donor cells (his blood type changed from O negative to A positive) his disease was too far progressed. Aidan passed away on April 29, 2012; just 11 months from his diagnosis.
Life for our family will never be the same. We will always have a hole in our hearts and time will not heal it. Our hope is to help other boys and their families affected by ALD.