COTA for Gavin G

Our Story

In November of 2017 Gavin was diagnosed with a rareand life limiting genetic disorder called GM3 Synthase Deficiency. Not only is his disorder extremely rare, he is also the first person ever identified with his specific genetic mutation. He is truly one of a kind.

Shortly after Gavin was diagnosed, we were put in contact with a specialist in Pennsylvania, who is one of a few doctors that has actually seen patients with this disorder. After speaking with the specialist about the treatment options they have tried in the past, which were unsuccessful, it was decided that we would go to Children’s Hospital of Pittsburgh to speak with the liver team about the possibility of a first ever liver transplant for GM3 Synthase Deficiency. After meeting with the liver team we decided a liver transplant is the best option we have to try to help our sweet boy.

For this specific transplant we have the option of a living donor… Gavin’s Aunt and Godmother will be the one to donate a portion of her liver to help save his life. We are so thankful that she is willing and able to do this for Gavin.

When all living donor testing is completed, the surgery will be scheduled. A few weeks before surgery, we will pack up most of our belongings and temporarily relocate from San Diego to Pittsburgh. Our family of five will be renting a home to stay in during the 2 to 6 months we will be there for the transplant.

With this liver transplant being a first for GM3, we can’t e certain it will stop the progression of the disorder, but with the power of prayer and the knowledge of the doctors and researchers we can be hopefully optimistic. With all of the unknown, we ask that you please keep our family and sweet Gavin in your prayers.