COTA for Team Gracie

Our Story

Grace Giuliana was diagnosed with Tetralogy of Fallot with pulmonary atresia before she was born, a congenital heart disease. We knew there was a possibility she could have 22q/DiGeorge Syndrome, but chose to wait for testing until she was born. When she was born her cardiac team discovered she had TOF/PA with MAPCAs as well, making her heart disease one of the most severe and complicated conditions. Grace was also diagnosed with DiGeorge Syndrome. At 10 days old Grace was transferred from the NICU at her birth hospital to Cincinnati Children’s. There she was diagnosed with complete DiGeorge anomaly meaning she has no immune system/no thymus. She has received heart surgery to correct her TOF/PA with MAPCAs, but we are still waiting on her thymus transplant. Right now, Gracie and her parents are at home living in isolation until this surgery happens. This transplant is essential for her future because it will allow her to start producing T-cells which fight infections, something most people are born able to do. We are so excited for the day when she is able to receive her thymus!

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.