SoCal woman battling rare disease in search of liver donor

ARCADIA, Calif. -- Tawny Drain and her parents look at her childhood photos. What they knew back then is now confronting them.

The 32-year-old is battling a rare disease that could eventually cause liver failure and is in desperate need of a transplant.

In sixth grade, Tawny says she started having abdominal pain.

"My spleen was enlarged. That's why I was in pain, so they took me out of all the sports, just so I wouldn't bleed out," she said.

By high school, doctors diagnosed her with Caroli disease, a rare inherited disorder marked by an unusually large liver, kidneys and spleen. She says her portal vein that carries blood from the spleen and gastrointestinal tract to the liver is blocked.

Tawny, a CrossFit instructor, who lost 80 pounds several years ago, says she tires more easily now, and workouts can be painful.

"My liver has lesions on it. The bile ducts don't work, which causes the itchiness," she said.

She says the itchiness all over her body is at times unbearable.

"There were days I didn't sleep for three nights in a row," Tawny said. "I just told my doctor I can't live like this. I just didn't want to live. It was terrible."

She says a steroid to treat those symptoms will only work for so long before leading to other damaging side effects. Her doctor says she needs a living liver donor.

"Things have been tough, but we have a great life. We just need a liver," said Maura Drain, Tawny's mother.

The Drain family has faced tough challenges.

Tawny's younger brother, Eddy, battled leukemia as a child. He's now 27.

Her younger sister Colleen has also been diagnosed with Caroli disease.

Tawny is about to turn 33 on Sunday. Her birthday wish is shared by family.

"I know we're asking a lot. It's a lot of sacrifice," Ken Drain, Tawny's father said. "I hope someone will come forward and be able to help us out through this."

To see if you're a potential donor for Tawny, click here.