FALMOUTH, Maine — Looking at 12-year-old Tigerlily White, you’d never know this active and vibrant young girl was born with a life-threatening liver disease.
White was born with biliary atresia, a disease that causes a blockage in the tubes that carry bile from the liver to the gallbladder. She received a liver transplant at 15 months old.
According to the American Liver Foundation, biliary atresia appears within the first two weeks of life and without treatment or transplant, children often do not live past age 2.
According to her mother, Crystal White, Tigerlily began showing symptoms of her disease at around 4 weeks old. Although she had a liver transplant and “technically doesn’t have it anymore,” complications remain because of some of the drugs she takes.
“For the most part the past two years have been a really, very awesomely normalish life,” Crystal White said. “She gets sick more often than healthy people and she takes medicine that suppresses her immune system, so a cold might mean she misses more school, but if you saw her you would have no idea.”
Because she lives her life in the most normal way possible and because she represents a face of liver disease most people don’t think about, the American Liver Foundation recently named Tigerlily a “Face of Liver Disease.”
“Tigerlily has been involved with the New England division [of the American Liver Foundation] for quite a few years, and we consider her family a part of our extended family, and she is a very special girl,” said Samantha Masterson, executive director of the American Liver Foundation New England chapter.
Masterson said the foundation wanted to showcase a younger person — White represents a population that people do not typically associate with liver disease.
“We wanted to showcase a young person who on the outside appears to be a healthy, vibrant young lady and no one would make the assumption that she has liver disease,” Masterson said. “The face of liver disease is anyone and everyone.”
Having White as a face of liver disease helps the American Liver Foundation to showcase the 30 million people who have more than 100 types of liver disease, not just those who have made what Masterson calls “poor life choices.”
“Unfortunately, the primary perception is that anyone with liver disease is someone who has made poor life choices — and that couldn’t be further from the truth,” she said. “We’re trying to change that with this campaign.”
When she is not in school, Tigerlily enjoys rock climbing, shopping at the Maine Mall and lives a “normal tweenagery life,” Crystal White said.
“She has not let the disease take over, or the subsequent issues with transplant take over her life,” she said. “She will go and do labs and then go to school like it is a regular day.”
Tigerlily said that while she tries to live as a normal seventh-grade student at Falmouth Middle School, the many doctor visits and frequent illnesses sometimes make school hard for her.
“It’s really hard at school,” she said. “I got sick for two days once and I went from Bs to, like, low Cs just from missing like two days of school and it took me two months to make it up.”
Although she is embarrassed by attention, Tigerlily said she is excited about helping the American Liver Foundation get the word out about who liver disease really affects.
“I am just hoping that people can realize that a lot of liver disease doesn’t just affect adults [who drink],” she said. “It affects a lot of little kids, too.”