One day she mixed baking soda and applesauce together and "ate a ton of it." Her stomach bloated and she was desperately ill. They believed she was trying, in a most ineffectual way, to put an end to her misery. She told Rebecca she'd like to join the military so she could be shot and killed. She even talked to a recruiter.

After about nine months with Joseph and Carolyn Bishop, Amy went to live with her mother.

Again, she mixed the baking soda and applesauce together. Again, she became violently ill.

On Friday nights, Lael would take her to Orem for dinner with the family, then take one or two of the children back to Lael's house for the weekend. It was clear she was sick, but she seemed to do better when she had one or two of the children. She was still interacting at that point.

After awhile, she'd deteriorated to a point where Robert questioned the value of those visits. And he was frustrated because, with his work schedule, weekends were the only time he had to spend with the children.

The overnight visits with Amy tapered to every other week, to Lael's dismay.

And Robert was still struggling under a mountain of debt. "We were, without question, going down the toilet," he said. Medical bills were mounting. He didn't see how he could pay that or the debt Amy had accumulated.

Even those with good health insurance say a disease like Huntington's can run through the lifetime benefits in a hurry. Deductibles alone can break a family.

Dr. John Roberts, Amy's neurologist, shakes his head sadly when asked about how families cope. "You would be surprised how many families divorce in order to stay alive," he said.

The disease puts a lot of pressure on personal relationships. It can be devastating financially.

"It's very common for a couple to divorce" so that the ill spouse can qualify for Medicaid, a federal-state matching program that provides medical care to families if they meet very stringent guidelines.

And this is where Lael and Robert again made different choices. Lael stayed married to John. Robert filed for divorce from Amy, although he is still very involved in her life.

"I had to think about my children," he says. "I could have built a bomb shelter and surrounded us with scripture. But we had to face reality. I had to do something. The insurance company had abandoned us. We were drowning in debt. And as a family, she couldn't qualify for Medicaid."

The decision made Amy's family sad. "In fairness, though, by the time I was faced with that choice and made a different one," says Lael today, "I had nothing left to protect. We'd already lost everything. Perhaps I would have chosen differently had I been in his place."