Our beautiful daughter Lily was born in January 2025. After three weeks, her jaundice was still present and her poop began to look concerning. Thanks to her amazing pediatrician who decided to check her bilirubin levels, we were admitted late February for so many tests, scans, labs, and procedures, which ultimately led to a Cholangiogram and Kasai procedure on March 12th, diagnosing her with Biliary Atresia. We knew the Kasai procedure only worked 1/3rd of the time and still held out hope that her liver would work and she would be part of the 1/3. After months of weekly lab draws, adjusting steroid medications, and seeing more concerning poop, it was evident that the Kasai did not work. Lily was evaluated for a liver transplant in early August to determine if she needed one, and was officially listed on the transplant list on August 20th, 2025.
We have decided to partner with COTA for assistance because we know that transplant-related expenses are lifelong. We still owe hospital bills for her previous surgeries and procedures, and because we live 2.5 hours from the transplant center in Stanford, we have to spend money on gas, hotels, etc. for appointments. We also have a beautiful almost 4-year-old daughter who we hope can stay close by with her grandparents after Lily’s surgery as we don’t want to be away from her while we are living in Stanford/Palo Alto for 2-3 months. COTA funds can also assist with living donor expenses. We are hoping to help support some of our family members who are generously applying to donate a portion of their liver to Lily through living donation.
COTA is an amazing organization and we would appreciate any donation given to COTA in honor of Lily, as we navigate the most challenging and emotional time of our lives.
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.