American Liver Foundation: rf_patientmatch

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Patient Stories

Tigerlily White

“The first two years of Tigerlily’s life were beyond what people call ‘challenging’. I saw babies sit alone all day in a hospital room while they were poked and prodded. My job was purely to save Tigerlily and, as a Mom, you do that at any cost.”

--Crystal White, living donor to, and mother of Tigerlily White

FAMILY OF FIVE BONDS TOGETHER FOR THE LOVE OF A SISTER AND DAUGHTER

Beautifully close. That is how someone would describe the White family of Falmouth, Maine if they ever saw them. “We do everything together,” says Crystal. For as symbiotic as they are, however, the family has not and cannot always be together when it comes to protecting nine year old Tigerlily’s health. If Zed, 12, and Nellie, 6, are exposed to illnesses at their school, it means that they have to be separated from their sister, something that all are resigned to do for the good of Tigerlily’s health. Tigerlily was born with liver disease and received a living donor transplant from her Mom at 15 months old. Since that time the road to good health has been complicated, but it has never stopped the family from finding a way to make it work for everyone.

Tigerlily was born at home in Standish, Maine, on July 9, 2000. She was full term and weighed almost nine pounds. Although healthy at the start, she began to develop jaundice after a month. By her seventh week, she was in the hospital with a diagnosis of biliary atresia, or inflammation and obstruction of the bile ducts. (To this day, doctors have not found a reason for this disease in infants and it affects thousands of infants yearly.) Tigerlily underwent the Kasai procedure which was performed to temporarily alleviate biliary atresia. Tigerlily’s small body did not react well to the procedure and was in and out of the hospital for months. In the end, she needed a liver transplant.

Crystal decided without hesitation to give Tigerlily part of her liver. In October 2001, they traveled to Mt. Sinai in New York where they would spend two months recovering. Zed was an active toddler at the time, so he spent most of that time without his Mom. The surgery was successful, but not without complications. At age three, Tigerlily underwent a bit of a setback while Crystal was caring for her newborn baby Nellie. From the time Nellie was born, she was shuttled back and forth to the hospital with Crystal and Tigerlily. “How does this affect our family? Sometime we try not to think about it,” says Crystal. “Because, ultimately we ALWAYS have to think about it; who around us is sick, should we take a plane, how long until she gets sick. It never leaves your head,” she says.

Tigerlily took a turn for the better in 2007 after a long road of hospitals, doctors, needles and medicine. Today, she is a fourth grade student in Falmouth. She loves math and art and is working hard to catch up on all the studies she missed over the years. Crystal says she is motivated to be a good student, loves ballet and tap and even sings in the chorus at school. (A regular Hannah Montana, her Mom says.)

This past August, Crystal joined the Run for Research® team and ran the Falmouth Road Race, seven hilly miles in the sticky summer weather; no easy feat. But then again, Tigerlily being healthy for one year in a row was an even bigger accomplishment. Crystal raised $1,700 for ALF and says she loved being a part of the team. She and Tigerlily were interviewed on Fox25 News in Boston; Tigerlily stole the show with her gleaming smile and sparkling eyes. “Running the race gave me a sense of control in all this madness so I could focus energy into a positive piece as opposed to the constant worry that one lives with having a child with chronic illness,” says Crystal.

Tigerlily was so inspired by her Mom running the Falmouth Road Race that she convinced her to run her first marathon on the Run for Research team. In April 2010, Crystal will do just that, raising money for the American Liver Foundation and ultimately for people like her daughter who need research to find a cure. “I really feel drawn to give back for every bit will make it that much better for another kid down the road,” Crystal says. “And Tigerlily isn’t fully cured; transplant has its own issues. Any proactive fundraising for research will help her too,” she says.