Condition: Liver Failure from an unknown cause
City, State: Bend, OR
Club: Cascade Middle School Sparrow Club Service Hours:
Date Adopted: 11/20/2015
Lilly has an infectious smile, giggle and personality and it is hard to see that she is not a normal seven-year-old. In April 2014, Lilly couldn’t kick a head cold. Cold symptoms would retreat for a couple weeks, then return again. It wasn’t until she became jaundiced that her parents, Jared and Kimberly, knew something else was wrong.
They took Lilly to have routine blood work done and doctors initially thought that she had a cyst in her gallbladder. She was rushed to Portland for an emergency surgery. The surgical exploration found no cyst. In fact, there was nothing they could see; her liver was failing for an unknown reason.
After a week in the hospital with 3-5 blood draws per day, Lilly was diagnosed with sub-acute liver failure, a rare condition from which almost everyone ends up with a transplant, but not Lilly. Liver failure occurs when large parts of the liver become damaged beyond repair and the liver is no longer able to function. In the past year, this liver failure took Lilly in and out of hospitals a dozen times. Some of her hospital stays have been a few nights, some as long as long as two weeks.
Today, Lilly takes an experimental combination of t-cell inhibitors and steroids to try to correct her low functioning liver. Very few people with her condition have ever avoided a transplant. Doctors are unsure what to do next or what her long term outcome will be.
With no specialists available in Oregon, Lilly travels to Seattle and San Francisco regularly for doctor visits, with other cities on the horizon. She gets needle pokes every 2-4 weeks, has had blood and plasma transfusions, and is no stranger to the lab at St. Charles. Doctors have taken every common reason for Lilly’s liver failure off the list. At one point, her case was presented to an international congress of hepatologists, but the congress had no further ideas on how to rectify her situation.
She has no known cause for her medical problems and no solution. If doctors cannot identify the cause to the liver failure, Lilly will need a liver transplant.
Throughout all of this, Lilly has never stopped smiling, charms the nurses at each lab, keeps her head high as she waves to the older yet "newcomer" patients in the waiting rooms, cheers on the staff at hospitals and has become a master puzzle assemblywoman. Her attitude is infectious. She excels in school, reading at a 3rd grade level in the first grade.
Although Lilly’s life has been physically tough, she is full of happiness and love. Lilly is in 1st grade and her favorite thing to do is to go to school with her classmates. Her hobbies include painting pottery and bowling. Lilly recently broke 100 and beat her Dad, Jared, at bowling! Lilly loves all cats; the one under her bed, Ella, and the ones on her sweatshirts, leggings, and dresses.
Lilly will be adopted as a Sparrow to Cascade Middle School in Bend. Students will work hard to raise money for Lilly through sponsored community service and fundraising projects.