Our son Stephen was born in October, 2021. During the first few days of his life the doctors knew something was wrong due to his high bilirubin levels. At just over a month old, he was diagnosed with Biliary Atresia and had his first life-saving surgery, the Kasai procedure.

Biliary atresia is a rare disease of the liver and bile ducts that occurs in 1 in 15,000 infants. Biliary atresia is an absence or destruction of the bile ducts causing bile flow from the liver to the gallbladder to be blocked. This leads to scarring of the liver (cirrhosis), and eventually liver failure. Currently, there is no known cure for biliary atresia and the only treatments are a Kasai procedure and liver transplant. The goal of the Kasai procedure is to prolong the need for a liver transplant, however most children's diagnosed with this disease will need a liver transplant at some point in life. Biliary Atresia is the leading cause of pediatric liver transplants.

Steve’s Kasai procedure was not successful and he is currently in need of a liver transplant. Steve began the transplant evaluation process in October 2022, just before his first birthday and is currently waiting for his gift of life.

We have had many hospital stays and know how hard they can be. We have felt the weight and emotion of going through the transplant process and waiting for your child to receive a life-saving gift. We know that transplant is not a cure and it is a lifelong journey with bumps along the way. Throughout this journey we were blessed with an amazing support system that has shown up for our family. Our son, our experience and our support system inspired us to start Tiny Transplant Titans. We hope to provide support to families going through the long road of pediatric transplant.

- Shannon and Steve