Mother’s Love, A Voice for Change

When American Liver Foundation (ALF) Liver Life Advocate® Kendra Levesque welcomed her daughter, Ceraphina, into the world, she never imagined that just days later her life would change forever. “Ceraphina was just two days old when doctors told us they suspected she had biliary atresia (BA), a rare disease of the livers bile ducts that affects only infants.” Kendra said, “I felt crushed, grief stricken, and enraged that this was happening to my baby. It was a level of hurt I had never experienced.”

Ceraphina soon underwent a Kasai procedure, a surgery in which blocked bile ducts outside the liver are replaced using a portion of the baby’s intestine, creating a new bile duct and helping delay the need for a lifesaving liver transplant. “I was so scared to hand over my baby,” Kendra remembers. “Time stood still in that waiting room. Luckily, I had my village of people there to support me – they’re the ones who really got me through that day.”

Today, uncertainty is still part of the Levesque family’s daily life. “We never really know when her health will take a turn. It always happens so fast,” she said. “I just try to have faith and trust that everything will turn out okay.” Behind the courage others see is a reality many parents quietly carry. “People would tell me, ‘You’re so strong’, but really, I just crumbled when nobody could see me. I didn’t want anyone to know how badly it broke me.”

Inspired by her daughter, and the lessons passed down by her own father, Kendra uses her voice – and motherly instinct – to stand up for all children affected by liver disease. “I believe in finding a cure, so no child has to fight the way my daughter has,” she said. “There has to be a healthier future for all children affected by liver disease.” Last month, Kendra put that belief into action by joining more than 35 patients, caregivers, and family members at the second Liver Life Advocacy Summit™ in Washington, D.C. She shared her family’s story with lawmakers and urged them to advance initiatives that improve prevention efforts, treatments, and access to care. “ALF gives us community – a group to fight with,” Kendra shares. “They help make change possible on a bigger level and give me hope that a better future is ahead.”

This Mother’s Day, we applaud mothers like Kendra—who turn love into action, courage into advocacy, and lived experience into hope for children and families facing a pediatric liver disease diagnosis. For moms currently navigating a BA diagnosis, Kendra’s message is simple and powerful: “You and your baby are stronger than you think. Have faith, and don’t give up hope.”

Learn more about pediatric liver disease in ALF’s Pediatric Liver Disease Information Center or join Kendra in the fight against liver disease and become a Liver Life Advocate, today.