Who is Aidan Seeger? 

Aidan Jack Seeger, was diagnosed with ALD (adrenoleukodystrophy) on June 2, 2011; he was just 6 years old. ALD is a horrific metabolic disease, which affects the myelin sheath in the brain and affects all neurological functioning, eventually leading to death. Aidan was in 1st grade, above grade level and running and playing as any other child his age. He started having vision problems around April and it was assumed he needed glasses.


After many doctors and finally an MRI and VLCFA blood test, Aidan was diagnosed with ALD. The only option to possibly stop the progression of the disease is a bone marrow transplant. Aidan received his unrelated cord blood transplant at Duke University in North Carolina on July 21, 2011, also his 7th birthday. The months that followed were grueling, the bone marrow transplant was a success, but unfortunately, since he was already symptomatic and with the effects of the chemotherapy and the disease progression, Aidan lost his ability to see, hear, eat, walk and communicate. After 10 months in the hospital, Aiden lost his battle with the disease on April 29, 2012.

What is ALD?

Adrenoleukodystrophy

 (ALD) is a rare, inherited disorder that leads to progressive brain damage, failure of the adrenal glands and eventually death. ALD is a disease in a group of genetic disorders called leukodystrophies. Adrenoleukodystrophy progressively damages the myelin sheath, a complex fatty neural tissue that insulates many nerves of the central and peripheral nervous systems. Without functional myelin, nerves are unable to aid in the conduction of an impulse, which leads to increasing disability.


What does The Aidan Jack Seeger Foundation do?

The Aidan Jack Seeger Foundation raises money for both newborn Screening and helping families who have boys affected by ALD.  In 2014, "Aidan's Law" goes into effect in New York and all children born there will be screened for ALD.  This will be the 46th disease that infants born in New York are tested for. Health officials have determined that the conditions tested for can all be detected at birth and can be improved or cured with early interventions. Children who have undergone bone marrow transplants before the onset of symptoms have had a much better prognosis and most are perfectly healthy today. 


The urgency for these families to find out about this genetic disease at birth so they can be monitored and treated before symptoms arise is paramount. Unfortunately, many parents have never heard of this disease until diagnosed after the onset of symptoms. There are horror stories of the families that have had 1 child diagnosed, often too late for treatment, and then miracles, often bittersweet of brothers, cousins, etc. being tested after the tragedy, getting treatment and living full normal lives. We can save lives with a simple test.


Infants are screened through blood tests, taken within a day or two of their birth.

New York has pioneered newborn screening and has been the first to test for many now standard newborn screenings including sickle cell anemia, HIV, krabbe disease and now ALD.

  





Oops! This site has expired.

If you are the site owner, please renew your premium subscription or contact support.