COTA for Ayla

Our Story

This is Ayla, our beautiful BA warrior. Ayla was diagnosed with BA (Biliary Atresia) in March of 2026, at four months old. Prolonged jaundice after birth led to additional testing, which ultimately revealed that Ayla’s liver was under significant stress. We were sent immediately to Children’s Mercy Hospital (CMH) in Kansas City, and after a biopsy we received her diagnosis. Biliary Atresia is a rare disease in which the bile ducts do not properly drain bile, resulting in a buildup of bile in the liver. Ayla’s liver was too damaged for surgeons to perform a Kasai, a common procedure used to treat Biliary Atresia. Transplant, we were informed, was our only option.

Ayla’s transplant evaluation was conducted in early April at CMH, and on April 30, 2026, she was placed on the transplant list. Unfortunately, our family contracted COVID shortly after, and Ayla had to be paused (or “inactivated”) on the list for three weeks. During that time she battled ascites (buildup of fluid in her abdomen) and a skin infection after an IV placement. Our girl fought through it all and was reactivated on the liver transplant list at the end of May. 

Biliary Atresia, especially unpalliated Biliary Atresia (BA without a Kasai), can lead to rapid decline, and since the end of May Ayla has experienced many setbacks. In addition to continued ascites, she has metabolic acidosis, suspected cholangitis, biliary lakes, and is failing to gain weight. In order to provide her with adequate nutrients, a PICC line was recently placed at the beginning of June. Our minds are somewhat eased knowing she will now be receiving what her body needs until transplant. Through all the exams and pokes and prods, Ayla has been a trooper. We couldn’t be more proud of our sweet girl.

We have partnered with COTA for assistance with transplant-related expenses, such as out-of-pocket medical care, lodging, transportation, and other expenses incurred as a result of needing a transplant. Ayla will have access to COTA funds as she ages. Our hope is to provide her with COTA support she can use for many, many years to come. A child born with Biliary Atresia is a patient for life.

It would be a blessing and a huge help if you would consider partnering with us by donating to COTA in honor of Ayla. We are also grateful for all the prayers and positive thoughts sent her way during this time.

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.