Ava June made her debut into the world as planned on June 6, 2023. Immediately after birth, we knew something was wrong and she was whisked to the NICU after barely having a chance to hold her in our arms for the first time. Ava spent a week in Cabell Huntington Hospital’s NICU before going into a coma. From there she was transferred to a larger children’s hospital where she was quickly diagnosed with a very rare genetic metabolic condition, Citrullenemia type 1. Because her condition went undiagnosed for so long, her ammonia levels, a substance toxic to the body, rose so high that irreversible brain damage was a result. After much research, we realized just how blessed we were that Ava had survived and overcame what she went through that first week of life. Ava endured countless tests, blood draws, x-rays, and surgeries before finally coming home on August 25th with a very strict protein-limited diet and a series of medications given 3 times a day. While a liver transplant had been mentioned to us, we were nervous about the procedure but chose to have an evaluation done at UPMC due to 4 hyperamenimic episodes within her 6 months of life at that time. UPMC agreed a liver transplant would be a life-changing surgery for Ava and would completely cure her condition. To know our baby has the chance to live a long happy life, eating what she wants and never worrying about elevated ammonia levels and brain damage again, is more than we could ever thank God for. I think we all write a story for our children before they are even born. It starts with ten tiny fingers and ten tiny toes and, while the story may veer depending on the writer’s personal values, it follows the same general happy, pain-free path. To each person their story is beautiful. We had a story all written for our precious Ava. While I wish that things were different, that wasn’t our story. This is Ava’s story. It’s not the one I would have written for her, but it was the one God did and it’s a beautiful story because it’s hers.

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.