Falmouth mom embraces 'Liver Life Challenge'
FALMOUTH — On Sunday, Aug. 9, 10,000 runners will be competing in the 37th CIGNA Falmouth Road Race held annually in Falmouth, Mass. The field for the seven-mile race along the coast of Cape Cod runs the gamut, from world-class athletes hoping to win, to local running enthusiasts hoping to finish.
One participant from Maine will be running the race with a singular objective: to raise money for the American Liver Foundation. Falmouth resident Crystal White, 36, will be running the "Liver Life Challenge" with the American Liver Foundation's Run for Research team. The team of 20 hopes to raise $20,000 for the ALF to support liver disease awareness, education and research.
White's reason for running is as personal as it gets. Her second child, Tigerlilly, is this year's "Liver Champion" for the Run for Research team. Nine years ago, Tigerlilly was born with biliary atresia, a rare liver disease with no cure that effects one in 13,000 infants born in the United States each year.
After an unsuccessful surgical procedure performed when she was 7 weeks old, the only option left was a liver transplant. Fortunately for Tigerlilly, Crystal was a donor match. When Tigerlilly was 1 year old, she received half of her mother's liver. Within three months Tigerlilly was practically transformed, toddling around like any other child her age.
While in most regards, this is a success story, Crystal stressed the reality that "a (liver) transplant is not a cure, it is a treatment with its own set of problems."
Since the transplant, Tigerlilly estimated – and her mom confirmed – she has been hospitalized 60 times for health complications resulting from the transplant. Her medication intake fluctuates based on her health: at times she's had to take 20 different prescriptions. Right now, her mother says she's doing well, and only takes four different medications each morning and night to keep her body from rejecting the donated liver.
"The biggest challenge is in trying to be more careful about exposing her to any illness. Last summer, she caught a 'bug' going around school, but because her immune system is so suppressed from her medications, her body couldn't fight it. She ended up having her spleen removed and was on morphine in the hospital for four weeks," White said.
"(But) most people don't know that anything is different for Tigerlilly. I think it's great that medicine has come so far that she can live a relatively normal life," she added.
According to the ALF Web site, successfully treating biliary atresia with a liver transplant "depends on the timely availability of a matching donor liver. Survival rates for liver transplant recipients have increased dramatically over recent years with improved surgical techniques and the development of drugs that help overcome the problem of organ rejection."
"Tigerlilly is absolutely a success story," said Jennifer Fluder, Run for Research manager at ALF, who was instrumental in selecting Tigerlilly as the liver champion. "It's also great to be able to put a younger face to liver disease. It gets a bad stigma, people think liver disease, and they think of alcohol or drugs. But there are over 100 different types of liver disease out there."
This is the third year an ALF Run for Research team is participating in the Falmouth Road Race. Fluder said she expects to exceed their fundraising goal of $20,000, with it's largest team of runners yet.
"The Falmouth Road Race has great potential to grow as a major fundraiser for the ALF," she said. "Right now, the Boston Marathon Run for Research team has been the largest-grossing fundraiser for the ALF."
Crystal, who started running a year ago after a long hiatus, said she hopes to keep the momentum going. "Maybe," she said, giving her daughter a big smile, "someday we could run the race together?"
Heather Gunther can be reached at 781-3661 ext. 115 or firstname.lastname@example.org
How to help
To support the ALF Run for Research team, visit go.liverfoundation.org/goto/Crystal.White. Or donations can be made directly to the American Liver Foundation, New England Chapter, 88 Winchester St., Newton, MA 02461.