American Liver Foundation Launches Bili the Brave™ Toolkit for Children with Biliary Atresia
New toolkit includes special plush lion with biliary atresia, children’s book, resources for families and more!
Facing liver disease as a child can be a lonely process for both kids and parents alike, but not anymore. American Liver Foundation (ALF) is proud to announce the launch of Bili the Brave™ for children and families affected by biliary atresia (BA). The Bili the Brave Toolkit™ includes Bili the Brave™, a special plush lion with biliary atresia, featuring a medical bracelet and an age-appropriate embroidered scar and bandage to acknowledge areas where an “ouch” may be felt by a child during their own BA journey. When a child squeezes Bili’s tummy, they will hear the sound of real children affected by BA whose collective “roars” were recorded for the sound chip.
“Bringing Bili the Brave to life has been the most rewarding creative project of my life,” said Peter Cullen, former Disney Channel executive and ALF board member, who helped create Bili. “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. Bili's positive attitude is a beacon of hope for all the young lions out there who share his condition. 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.”
The Bili the Brave Toolkit also includes a corresponding children’s book with captivating original artwork created by illustrator Nathaniel “Natie” Freson, who generously donated his time to this project. “It was an honor and a privilege to be able to illustrate this book that I hope will help children diagnosed with biliary atresia and their families,” said Natie.
The story of Bili the Brave was authored by Jennifer Cullen, whose passion for supporting children with liver disease stems from her own childhood experiences supporting her father, Peter Cullen, who battled autoimmune liver disease and underwent 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,” said Jennifer. “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.”
The Bili the Brave Toolkit will be distributed through top pediatric medical centers in the county. Additional educational materials for children and resources for adults are available at BilitheBrave.org, and an animated video will be released later this fall.
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. Learn more about BA at American Liver Foundation’s Pediatric Information Center. Parents and families can also find support through ALF’s Life with Pediatric Liver Disease Support Group available on Facebook and through a Life with Biliary Atresia Webinar Series, which features parents and children sharing their stories and covering topics such as Kasai procedure and transplantation, support networks, BA in adults, transitioning to adult care, nutrition and more. Families can register for upcoming webinars by joining the Facebook support group.
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 questions, please visit BilitheBrave.org.
About the American Liver Foundation
American Liver Foundation (ALF) is a national community of patients, caregivers and medical professionals dedicated to helping people improve their liver health. Providing guidance and life-saving resources, we are a beacon for the 100 million Americans affected by liver disease. We advocate for patients and families, fund medical research and educate the public about liver wellness and disease prevention. We bring people together through our educational programs and events and create a network of support that lasts a lifetime. ALF is the largest organization focused on all liver diseases and the trusted voice for patients and families living with liver disease. For more information visit www.liverfoundation.org or call: 1 800 GO LIVER (800-465-4837).
Last updated on October 10th, 2024 at 11:04 am