"I just wanted to know all the answers to their questions before they asked me," he says now. "We'd even been hiding Lael's letters from them because we didn't want to upset them. I know they thought it was strange that suddenly she stopped writing to us or we stopped enjoying the letters as a family." After he tested negative for the gene, he sat down with his children to discuss the disease.

Lael went with Julie. By that time, she was sure that Julie had the defective gene. "Her physical condition had become such that everyone was pretty convinced that she had it. Getting the test was pretty anti-climactic" by that time. She'd been recovering from the head injury, then she started deteriorating. It looked like she'd been given a double whammy — a debilitating accident and a killer disease.

Danny, who had just graduated from Brighton High Shool, where he was a popular kid and a cheerleader, had decided to have the genetic test. The only question was when. First, because there's no treatment or cure, genetic testing isn't available for underage children unless there's a compelling medical reason. He couldn't even consider it before he turned 18. Later, when he got his LDS mission call to Chile, his mother hoped he'd put off testing until he got back. Instead, he was tested in 1997 between the time he got the mission call and when he was supposed to enter the Missionary Training Center.

"I was sure I didn't have the disease," he says. "I knew it could happen, but it wouldn't. I just wanted them to tell me I was all right, so I could go on with my life."

Lael went with him. She, too, was sure that her baby would be OK.

She figured if three of her children had the illness, it would be Julie, who already showed symptoms, Amy, who was acting very different and had become stick-thin like her dad, and Charlie, who was also very thin.

All she could do was wait. Not only for the children to be tested but for them to decide if they wanted to tell her the results.

Two years would pass between the time the first genetic test was done and the last one. And it would be weeks before most of the children would share the results. Those who had the disease needed time to digest the information. Those who didn't weren't sure how to tell those who did.