On Oct. 15, more than 20 Crescenta Valley High School students volunteered and participated at a gathering of more than 100 patients and families who must deal with the daily effects of a rare devastating liver disease known as biliary atresia at The Saban Research Institute of Children’s Hospital Los Angeles during a day of education and support. Students from the CVHS baseball and volleyball programs volunteered to care for the children and their siblings while their parents attended the educational lectures, which took place over five hours during the day.
Known as Biliary Atresia Day, the first-of-its-kind event sponsored by Children’s Hospital Los Angeles allowed participants to learn from physician experts at the hospital as well as from each other. Physicians provided lectures on current treatments and issues facing patients while long-term survivors told personal stories of living with the disease.
“We showed families that they are not alone in their struggles,” said pediatric surgeon Kasper Wang, MD, Children’s Hospital Los Angeles, who is also senior author of a recent national research study on the disease.
Biliary atresia is a liver disease affecting newborns with malfunctioning bile ducts. Biliary atresia is rare in that only 1 in 10,000 babies are born with the disease annually, but it is in fact about as common as childhood leukemia. Children’s Hospital Los Angeles treats 10 to 12 new cases of biliary atresia per year.
“Biliary Atresia Day was a remarkable event for our patients and their families as well as all of us here at Children’s Hospital Los Angeles,” said Brent Polk, MD, who serves as chair of Pediatrics at the hospital and is also the director of The Saban Research Institute. “We heard so many emotional stories. One of the unexpected benefits of the event was the networking among families that took place where people were able to find support and comfort with each other.”
Families were extremely grateful for the opportunity to learn more about the disease and share their experiences with other families and clinicians.
“Help from the baseball and volleyball kids from CV was invaluable. They kept the kids occupied with arts and crafts and games while their parents listened to lectures. They showed the true spirit of community service,” said Cat Goodhue, the CHLA research coordinator who organized the event.
“What kids do best is play. And that’s exactly what we did. We played together, read together, and laughed together. I don’t think I’ve ever had so much fun playing with little kids. While we played with the kids and their sisters and brothers, parents got a chance to hear more about the disease and what can be done for it,” said Nolan Rea, one of the CVHS baseball players. “Plus, it was good to see our high school helping out with something so important. BA Day was really inspiring and I will definitely be getting more involved with the hospital because of this.”
“It’s an honor and a privilege to be involved with Children’s Hospital. For the CV baseball kids, it’s a chance to put others first and look beyond their own lives. I am very proud of the work the kids did down at CHLA,” said CVHS teacher and baseball coach Phil Torres.
Contributed by Kasper WANG