When Evan was two days old, I knew something wasn’t right. He was lethargic, hardly eating, and vomiting. All the doctors and nurses assured me this was normal for a newborn. At four days old, we received a call from his pediatrician, who said that his newborn screen had come back for Citrullinemia. He was transported via ambulance from our local hospital up to Johns Hopkins in Baltimore where he spent the next three weeks fighting for his life and becoming well enough in order for us to take him home. His first year of life was fairly stable, but we had also completed genetic testing, which showed that Evan had inherited a severe copy of the Citrullinemia gene. We knew that inevitably a liver transplant would be in our future. When he was 12 months old, we discovered his liver was already enlarged and showing early signs of hepatic fibrosis. Soon after he was put on the transplant list, and he received two liver transplants at 16 months old. We celebrated his 10-year liverversary in November 2024, and he continues to show us every day what a strong warrior he is.
