In basic terms: Katelyn & Zoe sleep under special blue lights and take medicine 4 times a day. They also try to get as much sunlight as possible in order to prevent the harmful side effects of their CNS. Winters are difficult because of the lack of sunshine. The bilirubin in their bodies is a constant threat to their well-being. It also causes the whites of their eyes to turn yellow.
In medical terms: Crigler-Najjar Syndrome (CNS) is an inherited metabolic disorder caused by a liver enzyme deficiency which prevents the usual metabolic breakdown of bilirubin; a normal by-product in our body’s disposal of worn-out red blood cells. Children with CNS are unable to eliminate bilirubin from their bodies and therefore must undergo daily 10-hour exposure to special blue lights, just to survive. Without daily treatments, a child would suffer brain damage, muscle and nerve damage and death due to bilirubin toxicity. Crigler-Najjar is a very rare disease. There are less than 50 known cases in the USA, and less than 200 worldwide. It is named after Dr. Crigler and Dr. Najjar who discovered the syndrome. Dr. John F. Crigler is a Special Medical Advisor to the Crigler-Najjar Association.