225 children will be diagnosed with Adrenoleukodystrophy (ALD) every year in this country alone. With Newborn Screening these children can be monitored and saved from the affects of this devastating disease.
Our son, Aidan jack, was diagnosed with ALD 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 child his age. He started having vision problems around April and we just assumed he needed glasses. After many doctors and finally an MRI and a 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, 2012, also his 7th birthday. The months that followed were grueling, the bone marrow transplant was a success, but unfortunately, since Aidan was already symptomatic and with the effects of chemotherapy and the disease progressing, all took its toll. Aidan lost his vision, hearing, ability to eat and walk and communicate. After 10 months in the hospital, our baby lost his life on April 29, 2012. If New York and the rest of the nation had ALD added to Newborn Screening, Aidan and so many others could have been saved. We have witnessed the miracles of children who have undergone bone marrow transplant before the onset of symptoms and are perfectly healthy today. ALD is often misdiagnosed and much time is wasted. We are asking for signatures to petition for ALD to be added to the Newborn Screening list both in New York State and nationally. These children can be saved if they are aware of the disease and it can be monitored.