Our daughters, Katelyn (age 9) and Zoe (age 3), have Crigler-Najjar Syndrome. They have to get as much sunlight as possible during the day and sleep under special blue medical lights at night in order to stay healthy. The girls’ livers don’t produce enough of a specific enzyme to control the biliruben levels in their bodies. Type I CNS patients produce no enzymes on their own. Type II patients produce partial enzymes. We recently found out that Katelyn and Zoe seem to be Type 1 1/2.
The only cure in the past was to have full liver transplants but we now have new hope. Children’s Hospital of Pittsburgh called this summer (June 2011) to let us know that they would like to perform Liver Cell Transplants on our girls. That means they’ll be getting an injection of liver cells to make up for their enzyme deficiency. We are so excited about this possible cure and feel very blessed to have the opportunity to give our girls a 'bright future without bright lights'. For more information about CNS you can visit www.KatelynsLight.com.
We will be traveling from Olathe, Colorado to Pittsburgh, PA soon to have the procedure done. I’ll be using this blog to journal their progress along the way.
