Bili the Brave™ was created by American Liver Foundation to help children and families affected by biliary atresia (BA) find the support and resources they need. BA is a rare liver disease that causes bile ducts to become inflamed and blocked and is usually diagnosed in infants. A child with BA will endure several tests, a surgical procedure and may need a lifesaving liver transplant.
The American Liver Foundation Bili the Brave Toolkit™ features Bili the Brave™, a plush lion with a small, embroidered scar and arm bandage to acknowledge a child’s own BA journey, as well as a medical bracelet. When a child squeezes Bili’s tummy, they will hear the sound of real children affected by BA whose collective “roars” were recorded into the sound chip. The toolkit also includes an accompanying children’s book and a nylon string bag. Additional educational materials for children and resources for adults, along with an animated video, are coming later this fall.
American Liver Foundation is forever grateful to our volunteers, Natie Freson and Jennifer Cullen who served as illustrator and author of the accompanying book, which brought Bili the Brave to life!
The Bili the Brave™ Toolkit is made possible through generous support from Ipsen and the Allan Doerr Family and is distributed free of charge to collaborating children’s hospitals. For more information contact Bili@liverfoundation.org
Resources
Support Journal for Parents
A Journal for Parents to keep track of important medical information provided during medical visits including, key terminology, medical trackers and a daily check-in.
Pediatric Information Center
Find disease specific information, patient stories, videos, activities, educational resources and more! Access the online site as a parent, teen or child to view age-appropriate information.
Participating Children's Hospitals
The Bili the Brave Toolkit is distributed only through collaborating children’s hospitals.