American Liver Foundation launches free toolkit for children
ALF's 'Bili the Brave' lion created for youngsters with biliary atresia
The American Liver Foundation (ALF) has launched a toolkit — featuring a plush lion named Bili the Brave — to support children and families affected by biliary atresia through their care journey.
Called the Bili the Brave Toolkit, the package contains a plush lion toy and a children’s book about the rare liver condition. The lion is “gifted” with biliary atresia.
The toolkit will be distributed free of charge through participating pediatric medical centers across the U.S.
Further, additional educational materials for children, and resources for adults, can be found on the Bili the Brave website.
“Bringing Bili the Brave to life has been the most rewarding creative project of my life,” Peter Cullen, an ALF board member and a former Disney Channel executive, who helped create Bili, said in a foundation press release. “Our hope is that Bili will remind children and parents alike that no matter what obstacles come their way, they can face them with bravery and a smile, just like Bili the Brave.”
American Liver Foundation also debuting Bili’s own website
Biliary atresia is a rare liver condition usually diagnosed in infancy, in which the series of tubes that carry the digestive fluid bile from the liver to the intestines become blocked and the flow of bile is stalled.
At a very young age, children with biliary atresia are faced with serious symptoms and extensive medical testing. These young patients typically need surgery to re-establish bile flow, and sometimes, a life-saving liver transplant.
The American Liver Foundation noted that this can be a scary process for children and their families. The Bili the Brave toolkit aims to help them through it.
The Bili the Brave stuffed animal wears a medical bracelet and has an age-appropriate embroidered scar and bandage. Those “acknowledge areas where an ‘ouch’ may be felt by a child during their own [biliary atresia] journey,” the release states.
When Bili’s belly is squeezed, it plays a recording of a group of children with biliary atresia giving a collective roar.
“When we created the character description around Bili, it was important to highlight that Bili the Brave is not just a lion with biliary atresia; but a lion with a heart full of courage and kindness,” Cullen said. “Bili’s positive attitude is a beacon of hope for all the young lions out there who share his condition.”
Growing up, I saw firsthand the struggles of liver disease, not just for the patient but also for those close to them. … I hope Bili can give children and their families a sense of courage and adventure, breaking down hospital walls and transporting them to a jungle of their own.
The corresponding children’s book was authored by Peter’s daughter, Jennifer Cullen, and features artwork by illustrator Nathaniel Freson. Freson donated his time and efforts to the project.
Jennifer Cullen says she was inspired by her childhood supporting her father through his battle with autoimmune liver disease — when the body’s immune system abnormally attacks the liver — and two life-saving transplants.
“Growing up, I saw firsthand the struggles of liver disease, not just for the patient but also for those close to them,” Jennifer Cullen said. “I’m proud to have played a part in creating Bili’s world, and I hope Bili can give children and their families a sense of courage and adventure, breaking down hospital walls and transporting them to a jungle of their own.”
Resources now available on the Bili the Brave website include a support journal for parents and a link to ALF’s pediatric information center. A new animated video and additional resources are planned for release later this year.
Bili the Brave was developed with the support of Ipsen and the Allan Doerr Family. Ipsen is the developer of odevixibat, an oral therapy approved for Alagille syndrome, another liver disease. That medication is now being tested in biliary atresia patients within a global Phase 3 clinical trial called BOLD (NCT04336722).
Beyond Bili the Brave, the American Liver Foundation offers a number of other resources for families living with biliary atresia, including its Life with Biliary Atresia and Beyond Support Group on Facebook.
By joining the Facebook group, families can register for ALF’s Life with Biliary Atresia Webinars, where parents and children share stories related to their experiences with biliary atresia. Topics have included surgery, transplants, support networks, and transitioning to adulthood.
About the Author
