COTA for Addi's Journey

Our Story

Ron and Sarah had always dreamed of starting a family. After three years of trying, they began seeing a fertility doctor. Just as they were preparing for treatment, life surprised them—they found out they were expecting twins. Twenty weeks later, they learned the exciting news that both babies were girls. But during the anatomy scan, doctors noticed something unusual: Baby A was missing her gallbladder. At the time, Ron and Sarah didn’t realize what that might mean for their baby’s future.

The twins, Addison Sage and Lainee Reigh, were born on January 11, 2025—six weeks early. Both spent time in the NICU before going home. Addison was monitored for jaundice, but her levels didn’t require treatment. As the babies grew, Ron and Sarah noticed their skin tones looked different but didn’t think much of it—until a pediatrician raised concerns at their three-month checkup.

Addison was sent for bloodwork and an ultrasound. Results showed extremely high bilirubin levels and confirmed that her gallbladder was not visible. Soon after, her family heard the words no parent ever wants to hear: biliary atresia. Within a week, Addison underwent a liver biopsy and a surgery called the Kasai Procedure at NewYork-Presbyterian in April. The surgery confirmed the diagnosis and created a new pathway for her liver to drain.

Though Addison recovered well from the procedure, her bloodwork showed the results weren’t as successful as hoped. Now, just six months later, Addison has been officially placed on the liver transplant list as of September 25, 2025.

Through it all, Addison continues to grow, gain weight, and fill her family’s days with smiles. She is a tiny warrior with incredible strength and resilience, proving that even the smallest fighters can be mighty.

Ron and Sarah are doing everything they can to care for Addison and her twin sister, Lainee. But the journey has taken a heavy toll—emotionally, physically, and financially. Between travel to specialists, ongoing treatments, and preparing for transplant-related care, the expenses have become overwhelming.

That’s where we can help. By donating to COTA for Addi’s Journey, sharing Addison’s story, and keeping this family in your thoughts and prayers, you can make a real difference. Every gift to COTA for Addi’s Journey, no matter the size, assists with transplant-related expenses and helps give Addison the chance at a healthier future.

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.