By Brandon HENSLEY
“Damn you, Damn you, biliary atresia
Progressive inflammatory childhood liver disease
Damn you, Damn you, biliary Atresia
I got bad bile ducts but I’m still happy as can be”
Families of those affected by biliary atresia heard those words sung by Brook Slemmer Saturday morning at Children’s Hospital of Los Angeles to commemorate the second annual Biliary Atresia Day.
The song was written by a family several years ago with a child who has the disease. The lyrics were given to guitarist Slemmer, the hospital’s music therapist, who was more than happy to put music to the lyrics.
Held at the Saban Research Institute, across the street from the main hospital, Biliary Atresia Day is the hospital’s way of creating awareness for the disease. Kasper Wang, pediatric surgeon and director of the BA program at Children’s Hospital, spoke to the more than 35 families who attended about research and awareness. The families’ kids were taken care of, because that job belonged about 20 student volunteers from Crescenta Valley High School in the baseball and volleyball programs.
“Today is a day we dedicate to the parents, and we empower them with information,” said Wang, whose son Bryan is on the CV varsity baseball team.
BA is a childhood disease that affects the liver, and can cause the bile ducts to be blocked. If not detected early, a liver transplant is needed and that means if the child survives, their life is changed forever.
“It’s a disease that’s lethal. It’s as common as childhood leukemia, and yet people don’t know about it,” said Wang. “Everybody knows cancer, but biliary atresia is as cancer is, and yet it’s something that’s not well appreciated.”
Wang said most pediatricians don’t know to look for it, so it’s a disease that goes unnoticed. In his speech, Wang talked about the need for early detection. He said the disease is Children’s Hospital’s most common reason for pediatric transplant.
Julie Elginer, who does legislative consultant work for BA, also spoke to the families. Elginer, who has an 8-year-old nephew with BA, spoke more about awareness.
“This talk [was] to help people understand the power of advocacy and how they could take their individual experience and lift up their voice on behalf of biliary atresia to increase awareness and serve as advocates of the condition,” she said.
The Falcon athletes didn’t have to make any special presentations. They simply had to entertain the children –some of whom have BA and some who were their siblings – and it ended up being a fun experience.
“I just wanted to be in touch with the kids and help out,” said freshman volleyball player Ayrn Alanizi.
Alanizi, who had found a friend in a child named Paula, said she was nervous at first, and that she didn’t want to “mess up.” “I know some kids are here for the first time. After about 10 minutes they open up. But it’s okay because they have their siblings. Their siblings take responsibility, too.”
This was the second time varsity baseball player Nolan Rea came to Biliary Atresia Day.
“It puts a lot of things into perspective,” Rea said. “It definitely did for me last year. It opens up our world. These kids are so young.”
Rea met 6-year-old Tols Yoon last year, and this year they became buddies for the day. The CV athletes all spent time outside in the play area, painting faces and making masks.
“They’re really open and they’ll stay with you,” Rea said of the kids. “They’re not embarrassed at all.”