Special Chair Helps Girl With Rare Disease

Dec. 7, 2004 — -- When Katelyn Bachman was born, the yellow tinge to her skin and eyes led doctors to believe she had jaundice. About a month later, doctors informed her parents that she suffers from a rare liver disease known as Crigler-Najjar Syndrome.

Patients with Crigler-Najjar lack an enzyme that breaks down bilirubin, which helps the body clear worn-out red blood cells. An accumulation of bilirubin causes jaundice; too much bilirubin in the body can cause brain damage or even death.

The disease is extremely rare, with fewer than 50 known cases in the United States, and the only cure is a liver transplant -- something Katelyn's parents aren't considering right now. The only treatment option is exposure to special blue lights, which help break down bilirubin.

Until recently, the 2-year-old had to spend 12 hours a day in phototherapy. The treatment could be done while she was sleeping, but it was hard on both Katelyn and her family.

"We thought that she would be hooked up to the wall her whole life," said Jeff Bachman. "At first we had to keep her eyes covered -- it made her panic."

But the Bachman family reached across the world to find a more reasonable treatment for their daughter and, thanks to members of their Texas community who stepped in to lend a hand, Katelyn now leads a much more normal life.

On the Internet, the Bachmans found an Australian man who had created a special light chair -- essentially a box with 32 light bulbs in it as opposed to the eight she slept under. The chair would cut Katelyn's treatment time down to about one hour per day and allow her to interact with her family at the same time.

Neighbors from the Bachmans' hometown of Pleasanton banded together. "Our church, the whole community came together to do this," said Jeff.

Family friend Jason Underbrink built the chair based on the plans from Australia, and local businesses and the First Baptist Church of Pleasanton, where Jeff is a youth minister, helped fund it.