Sept. 12, 1999: Original "Generations of tears"Julie Askew died first, a year and a half ago, at age 31, with most of her dreams unfulfilled.

Her father, John, died in May.

Her sister Amy Bishop, mother of five, likely will be next.

And younger brother Danny goes about his life — newlywed, college student, full-time employee, returned missionary — keenly aware that he, too, is likely to fall prey to the same fate because he carries the gene of the deadly genetic disease that has been stalking his family.

Three years ago, the Deseret News in its special project, "Generations of Tears," introduced readers to the Askew family.

Here, we update their story . . .

When John and Lael Askew first heard his diagnosis — Huntington's disease — they were relieved. It meant there was a reason for his erratic behavior. They thought the doctor would prescribe medication and they'd resume the lives that had been so rich with personal achievement, accolades and adventures.

John Askew had been deputy energy czar under President Gerald Ford, then became a successful stockbroker. Before moving back to their native Utah in 1981, his family had enjoyed the unusual privileges accorded Washington insiders, the parties and inaugural balls.

When things began to unravel, Lael first thought John had had a nervous breakdown, caused perhaps in part by stress over their daughter Julie, No. 4 of six children, who had been "acting up" as a teenager, then suffered devastating injuries in a car accident. Her life would never again be normal.

John did odd things. Once focused and successful, employment became a challenge. He'd been much sought-after as a corporate leader; he was fired several times. His driving became so erratic he eventually had to give up his keys. Even biking, his focus dissolved, and he once crashed to avoid hitting a cow. Eventually, he stayed home, amusing himself with their youngest child, Danny, who was in high school by then. They were, financially, sinking fast, selling belongings, burning through savings, downsizing homes along with hopes.

It wasn't typical behavior for a brilliant, focused man. But it was, they learned, not that unusual for someone who has Huntington's.

Huntington's disease was named for Dr. George Huntington who, in 1872, documented a series of disturbing symptoms, noting similar descriptions that date back to the Middle Ages. He correctly concluded it could be passed from one generation to the next, that it seemed to appear in adulthood and that it created a "tendency to insanity." If it bypassed someone, he said, it didn't show up in their children or grandchildren.

Science proved Huntington correct on all counts. It's an autosomal disease, inherited directly from a parent, and each child of someone with the disease has a 50-50 chance of getting it. A child who doesn't inherit the disease cannot pass it on.

Later, the family realized John inherited it from his mother, Idelle, who died in an institution, her disease presumably undiagnosed.

The form the illness takes varies individually, but there are three common traits: a movement disorder, whether it's chorea, a dancelike, jerky motion, or ataxia, which is difficulty walking and stiffness. John, for instance, tended to list a bit to one side. Dementia is common. So is a psychiatric component separate from the dementia, whether it's depression, delusions, paranoia, mania or obsessive compulsive disorder. It has been compared to having multiple sclerosis, Parkinson's disease and Alzheimer's disease at the same time.

Treatments may alleviate symptoms to some degree. There is no cure. People die with Huntington's, though usually of an associated illness like pneumonia. That claimed John last spring, May 9, on Amy's birthday.

At John's funeral, others remembered the John who used to be. His baby, Danny, who as a teenager had the front-row seat to what was happening as the disease overtook John, talked about what he learned from his father in those days of illness and uncertainty. Important things.

The less John did, the more Lael took on, at one point working three jobs. In coming years, she would scale back her jobs so she would have time to visit her husband and daughters in their nursing homes. Every Saturday, until his death, she would take him out to eat. He never lost his taste for or love of food — even though three years before his death he couldn't order because he couldn't remember what it was that he liked. Lael became the keeper of even the most personal memories.

John and Julie had been in nursing homes for a while before it became necessary for Amy to enter one, as well. She'd gone from brilliant, beautiful and dedicated to her family to a silent, seemingly sullen woman who had to change nursing homes a couple of times because she was angry and aggressive around other patients. She loved her children more than anything in her life but had become abusive to them because of the disease.

Life for the family these past three years has been punctuated by all the milestones that come with living: weddings, funerals, job changes, moves and births.

Julie died on her brother Charlie's birthday, March 16, 2001. She wanted children and never had them. The car wreck and the disease's toll ravaged her before she'd even really fallen in love. She felt that lack keenly. She'd joke, somewhat wistfully, that she'd like to adopt, knowing it would never happen but wishing that life had been different.

Still, Julie, who had been the most difficult teenager, was the loveliest of patients. She was sweet and caring and, even in the worst throes of the dread disease, recognized the pain it inflicted on those who were well, who hurt simply because they loved her and John and Amy.

While they were worrying about her deteriorating condition, she was worrying about them.

In 1999, Amy didn't speak. No one was sure, then, whether she wouldn't or couldn't. She'd seemed, for a while, nearly catatonic. When that phase of the illness passed, a silent, seemingly sullen Amy emerged. She'd gone to live with her husband Robert's parents. With the abuse, it had become clear she could never live at home with the children again. Eventually, Robert and Amy divorced. Lael became her legal guardian.

Still, he and the children — Rebecca, Craig, Trevor, Andrew and Hannah — visited her regularly and still do. The older kids were grappling with all the changes in their lives, but suddenly they could breathe again. They'd been walking on eggshells around her for a long time, hoping to avoid a disease-induced wrath they couldn't understand. And they were also trying to get used to the idea that they, too, might one day have Huntington's. That the gene could already be inside them, waiting like a bomb to detonate.

Back then, they longed for a woman's touch, especially the two littlest Bishops, who never knew the good years when Amy was everything you could hope for as a mother. If Hannah met a woman and liked her, she might ask if she'd be her mother.

Whether her silence then was a symptom of the disease or a choice, there's no doubt that anger and frustration fueled what was going on in the mysterious realm of Amy Bishop's mind.

Amy these days is more plump and less active, having stopped the pacing that marked her early days in the nursing home. She smiles and even, on occasion, giggles. She's calmer.

And in what seems like nothing less than a miracle, she is talking again. It's a vast departure from the long months when she seemed catatonic, only to emerge volatile, though silent.

She's clearly in the throes of a dreadful illness, and her mental state is anything but static. Still, she is able to interact again, albeit in simple sentences and mostly simple thoughts.

Her moods still swing. For a period, she decided not to take her medication; in her delusions they were illegal drugs, and she became psychotic. She's past that now, but from June to August, she stopped eating, quit talking and refused all medication. She had to be hospitalized. And she lost 50 pounds.

"I asked her if she wanted to kill herself," Lael said of her oldest daughter. "No, I want to live, she said."

Life for Amy's children has changed even more. The Bishops moved north from Orem to a Salt Lake suburb, where the kids are active in school and play. There's a measure of relief living in a new neighborhood where no one tries to second-guess the need for divorce. She's on Medicaid now. They're no longer riding the roller coaster of Amy's disease-induced outbursts. And neighbors, who never knew Amy, don't ask questions that constantly remind the children that some of them, in fact, quite likely harbor the frightening Huntington's gene.

Though Amy is and always will be their mother, her children have happily accepted the love of a new mother as well. Robert Bishop married a woman who was once the children's nanny, Anne-Marie Waldron. And the family has grown to include a new little sister, Paige, who is almost 11 months old.

Robert still spends some of his time raising money for research into Huntington's disease and updating the Web page he created, www.curehd.org.

Rebecca, 18, has evolved, butterfly-like, from a young teen worried sick about her mom and the lack of a woman in her life at a time she really needed one into a responsible young woman. A sophomore at Brigham Young University (she had enough credits to skip her freshman year), she spent the summer as a nanny, taking care of four young children. Children top her list of loves, followed by music and art.

She understands better than her little brothers and sister that the disease is a real, very personal possibility. She also knows she wants gene testing to put the question to bed once and for all. But she's not sure when. And she's determined not to let that decision — or an uncertain future — ruin even a single day.

Craig and Trevor don't talk much about Huntington's, though it's clear they are both bothered by the possibility. Craig loves his mom but dreads going to see her. In her mental state, it's hard for him to think the visits matter. And the bad days before she entered the nursing home are still vivid, while memories of the pre-disease mom elude him.

Mostly the boys are busy being boys, caught up in school activities and friends. Craig, 15, is a sophomore in high school who loves basketball and debate. Trevor, 12, is in seventh grade. He's a voracious reader and an incredible artist who loves to play chess.

Andrew and Hannah used to play a game the others called "Father, Mother." In it, one was always in desperate trouble and the other would effect an exciting rescue. They don't play that anymore. Perhaps their lives feel more stable, and they don't feel a need now for rescue. They have been blessed with two moms. One at home who adores them and guides them, as Amy did the older children when they were that age. The other is more like an eccentric aunt: You go to visit and you love her, but the mother-child relationship's not quite real. After all, Amy was pregnant with Hannah when the behavioral symptoms of Huntington's disease began to rage, but she'd begun to do peculiar things before the two youngest children were even born.

At 9, Andrew, a third-grader, is an amazingly sweet-natured child. He's a good student, but left to his own devices, he'd play video games all day. He and Hannah, 7, are still best friends, devoted to each other despite the fact that they are very different. A second-grader, she's a drama queen, but a joyous one. She loves to sing and makes up her own clever songs. She likes to draw.

They were very young when Huntington's ravaged their family, and they remain blissfully unaware that it may be in their own futures, too.

The other Askews, Lael, John's brother Bob, and Scott, Jane and Charlie, know that though they don't carry the Huntington's gene, they carry a huge responsibility — and undying love — for those who do.

Lael describes her life, in many ways, as "same thing, different day." She spends less time in nursing homes now, but seeing Amy is nearly a daily event. The disease has brought tragedy into her life and also some joy. Her family has drawn closer perhaps than it would have without these challenges. Even her brother-in-law, Bob Askew, has moved back to the Wasatch Front to be more involved on a team where time counts a lot, since each day is uncertain.

Jane and Charlie, Amy's sister and brother, live far away with their own expanding families. They each have four children. Still, they're drawn back for family events and are in close contact with their mother by phone.

Scott, the oldest Askew child, has two daughters and a business that allows him to spend time with his family. He gently teases Amy, his buddy when they were growing up. He encourages his mom. And he's protective of both Amy and Danny.

Ask Danny about his life and he'll tell you he's not afraid anymore.

When he got the gene test that confirmed he carried the Huntington's gene, he was devastated but determined to plan for it. Still, he wondered, would he have the things that most people assume will be part of their lives: marriage, parenthood, a career? Those were things he had not only expected, but counted on.

Even getting health insurance seemed then like a very scary proposition.

Against what looked to him like insurmountable odds, he met the "right girl" and married two years ago.

Kristi Taylor Askew had also grown up in the neighborhood where he was raised, before his family moved away. She remembered him well but hadn't seen him for years when in 1999 she read "Generations of Tears," chronicling the disease's toll on his family. When they got reacquainted, she already knew he carried the Huntington's gene, so there were no surprises there.

What she didn't know — and didn't expect — was that she'd fall in love with him.

Danny and Kristi are still working out the details of having children, since the only way to be 100 percent sure you don't pass on the disease is to adopt or not have children.

When he sees an article that outlines the latest technologies — scientists are exploring ways to select fertilized eggs that don't carry the Huntington gene, then implant them using invitro fertilization, for instance — he files the information away for later.

He wants to be a father. He knows he'll be a good one. But what that means and how he'll accomplish it are still up in the air.

Kristi Askew is the first spouse in this family to have been allowed a choice about Huntington's. "Lael had no clue. Neither did Robert," she says. "I feel blessed that I know."

It changes the decisions a couple makes, from the life-shaking to the mundane. Even things like how long a mortgage you want to carry, a 30-year or a 15-year.

Amid the uncertainties, one thing is rock solid: "Danny's the one I fell in love with. I think everyone has their own challenge in their life. I don't know what some of my challenges will be, but it's almost nice knowing my big one.

"We're still working our way through it," with the benefit of being able to ask questions of others. "Not having kids would not be an option," she says.

"We'll bring the Lord into that."


In 1999, Deseret News reporter Lois M. Collins and photographer Laura Seitz spent months chronicling the effect of Huntington's disease on the John and Lael Askew family. Their work was published in "Generations of Tears," an eight-page special report that received numerous awards, including a first-place national journalism award for feature writing from the Society of Professional Journalists.

The original "Generations of Tears" is accessible on the Deseret News' Web site deseretnews.com by clicking on "Special Projects" in the right-hand column or by going directly to: deseretnews.com/misc/huntingtons/.


E-mail: lois@desnews.com