Robert Bishop, Amy's husband, was particularly concerned about the insurance ramifications for his children. He had become convinced that his wife did, indeed, carry the gene.

It seemed to him that the witty, clever woman he'd married was being replaced by someone who was increasingly anxious and depressed. She said odd things.

For example, she had come to believe that the spacing between children was somehow wrong with her latest pregnancy. Her first four children were each three years apart. This baby was only two years apart. She was convinced the baby would be doomed to failure.

He searched for a place that would allow anonymous testing, while also scrambling to make sure that everyone in his family had adequate health and life insurance, should his fears be realized. A positive test, he reasoned, would make it hard to get insurance for Amy's children — whether they should in later years prove to carry the Huntington's mutation or not.

He found he couldn't get additional health insurance for Amy until the baby, Hannah, was 30 days old. And he wasn't about to get a diagnosis until he had the insurance.

The pressure on Amy was tremendous.

Eventually, he arranged for Scott and Amy to be tested anonymously in Canada. Scott remembers that Amy cried all the way to Vancouver. She was falling apart. And Scott was anxious himself about the testing, which they were doing without telling the rest of the family.

Although they were tested together, they couldn't get their results together. Each needed a separate support person, regardless of the outcome, they were told.

They returned home — Amy to Orem and Scott to Phoenix — to sweat it out. It was just before Christmas 1995.

Some of the others were getting tested at about the same time, but it's hard to pinpoint exactly when. They simply didn't talk about it. The exception was Charlie, who called his mother from the clinic when he got his results. He and his wife Traci would be driving home from Wichita to Kansas City. If something happened to them en route, they wanted to be sure that their children would have the knowledge they needed to face their future.

Jane went with her husband Gary to Tampa, two hours' drive from home, to get the testing.

John's brother, Bob, also flew to Wichita for testing. But he and his wife, Judy, had determined they wouldn't even tell their children about their "Uncle Skip" as they called John, until they knew what they were facing.