Leslie, a small, intense woman with thick glasses and a nervous smile, wondered what was going on. Was there something in the couple's genes that was making their kids sick? She had medical problems herself: headaches, allergies. She'd battled attention deficit disorder since college. She was sure at least one of the boys had it too.
When a geneticist the couple consulted saw no pattern to the family's health problems, Leslie said she couldn't believe it. "I really felt in my gut that they had to be related somehow."
But there was little time for research. Kirk, now 43, was teaching music classes at two local colleges and the academy, a Seventh-day Adventist school, while squeezing private lessons in between.
Leslie, a former high school math teacher, had to cut back on tutoring students to manage the boys' care. Money was tight.
Then came a disconcerting surprise: Leslie was pregnant again. Part of her didn't want to risk having another unhealthy child. But this one turned out to be a girl -- finally, after so many boys.
They named her Esther. They hoped she would be healthier, but by the time she was a toddler she was plagued by sleep apnea, chronic viral infections and a seizure disorder, according to medical and court records.
In some ways, the Udvardis were just like their friends and neighbors: committed to their hobbies and routines, devoted to their faith. The parents, who had converted to Seventh-day Adventism shortly after moving west from Indiana, had close friends in the tight-knit church community that revolves around Loma Linda University. The family attended services whenever they could.
They gathered for board games on Saturday nights. Matthew played saxophone. Sam excelled on the school's Mock Trial team. Abram and Esther were lively grade-schoolers.
"I thought I was normal," recalled Abram recently.
Still, Leslie said, she couldn't stop worrying about the kids, especially Esther. More and more, the little girl had headaches and cried out in the night, complaining of pain in her legs. The doctors at Loma Linda University Medical Center couldn't pinpoint a cause.
But they didn't hear her cries, Leslie recalled thinking. Leslie pushed relentlessly, at times brashly, for answers.
Finally, on an MRI scan, one doctor saw a syrinx, a fluid-filled cavity, in Esther's spinal cord. Leslie Googled "syrinx" and found that it could be caused by a congenital abnormality called a Chiari malformation, in which a small portion of brain tissue at the base of the skull bulges into the spinal canal, blocking the flow of fluid.
She began posting questions online. She discovered that Chiari could be associated with a hereditary connective-tissue disorder called Ehlers-Danlos syndrome, or EDS. Rare and potentially crippling, it is caused by defects in the genes for collagen, the structural protein in skin, organs, tendons and bones. There are several forms of the syndrome, some more damaging than others, some difficult to diagnose.
Leslie was struck by the bizarre and seemingly unconnected array of symptoms.
To Kirk, they seemed to describe the Udvardi children, reading "like a list of their problems."
Leslie began writing to Chiari and EDS experts nationwide, sending them the kids' medical records. To her relief, doctors wrote back: Yes, we see this in our patients.
Encouraged by the response of the Chiari Institute in New York, Leslie said she made plans to take Esther there for an evaluation. Treating the Chiari could mean risky spinal surgery, but Leslie worried that without expert intervention, her daughter might end up in a wheelchair.
Maybe her boys could be checked at the same time, Leslie recalled thinking, although the diagnostic tests -- controversial even among experts -- seemed frightening. The children would have to endure two days of "invasive surgical traction." To check for blockages of spinal fluid characteristic of Chiari, screws would be inserted in their temples, then attached to pulleys and cables that pulled their heads upward.