Across the moonless dark of Lancaster County, where horse-drawn buggies clatter along country roads and many families shun electricity, a strange blue light cuts harshly through the night.
Over the cornfields it beckons, beaming from the bedroom window of a 100-year-old Mennonite farmhouse.
Downstairs, flaxen-haired girls read to younger children ... a mother in a traditional long dress and white cap rocks a slumbering child ... a father returning from the fields pulls up a chair to the coal-fired stove.
The scene is bathed in the glow of a single gas lamp.
Upstairs, a baby sleeps in another kind of light, in a very different world.
High-intensity blue electric rays burn down upon his crib, creating an iridescent haze that envelops the room. The lights are suspended from a heavy stainless steel canopy just inches above the child.
The baby wears only a diaper and has no blankets. Mirrors are built into one side of the crib. Fans hum loudly to keep him cool.
With his chubby cheeks and bleached blond hair, 15-month old Bryan Martin looks like an angel in his luminous cocoon.
But Bryan is a very sick child.
The whites of his eyes are yellow and his skin is an unnatural gold.
The blue lights are saving his life.
BLUE LIGHT
In the lush, green pastures of Pennsylvania Dutch country, where life revolves around the one-room schoolhouse, the farm and the church, and locals speak a distinctive German dialect, the strange blue lights beam from a handful of homes.
To the Amish and Mennonites they mean one thing — the presence of an extraordinarily rare disease that forces afflicted children to spend 10 to 12 hours a day, undressed, under lights.
The children suffer from a genetic disorder that causes high levels of a toxin called bilirubin to build up in their bodies, resulting in severe jaundice that, if untreated, causes brain damage and death.
Bilirubin is normally broken down by an enzyme in the liver. If the enzyme is missing, bilirubin can be checked only by the wavelengths of blue lights.
The disease is Crigler-Najjar syndrome, named for two doctors who identified it 55 years ago. There are about 110 known cases of Crigler's worldwide. About 20 are among the Amish and Mennonites in Pennsylvania.
There is no cure; Bryan's only hope of long-term survival is a liver transplant.
Nothing prepared Katie Martin for the news that her firstborn, Derick, had Crigler's. Several years earlier, a nephew had died of the disease at age 3.
"I thought it was a death sentence," she said.
In the past, it usually was. But in 1990 a new clinic had just opened in Strasburg specializing in children with rare diseases.
There, the Martins met a doctor who had once studied with Dr. John Crigler, who first described the disease with Dr. Victor Najjar in 1952. The doctor told them to bring the baby for blood tests every month. And to keep him under blue lights.
So the Martins — who are unrelated to Bryan Martin — took Derick back to their 56-hectare dairy farm in Mifflinberg and embarked on a life of testing, monitoring and lights.
Floyd fashioned a stainless steel-framed canopy to hold the lights over his son's bed. When his next child, Amy, was born, he made another set of lights. When their three cousins across the hill were stricken, he made more.
Today, Floyd Martin's blue-light beds, which cost about US$1,000, are sought by Crigler families all over the world.
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