Fighting for Time
09/12/1994 at 01:00 AM EDT
WE USED TO FEEL LIKE THE LUCKIEST people in the world," says Vicki Margus, in the living room of her Boca Raton, Fla., home. "We would go places with the boys, and old ladies would stop me and say, 'How beautiful your kids are and how well-behaved.' "
At this moment the three boys in question are out by the pool dashing around with a bow and suction-cup arrows, picking flowers off their mother's potted plants. Suddenly the door bursts open and Cole, the oldest at 6 ½, races in. "Mommy, this is for you," he says, offering a red Play-Doh vase holding green geranium leaves. He sets his gift on the coffee table and dashes out again, leaving Vicki with a smile on her face and pain in her heart.
Cole is Vicki and Brad Margus's only healthy child. The other two, Jarrett, 5 ½, and Quinn, 3 ½, have a rare genetic disorder known as ataxia-telangiectasia, which was diagnosed just over a year ago and will gradually rob them of all their motor functions and, probably by their teens, of life itself. Of the 400 to 500 children in the U.S. known to have A-T—and the thousands more whose illness has gone undiagnosed because so few doctors test for it—80 percent will die before they are 20, virtually all the rest before age 30. "My first instinct when I heard the diagnosis," says Vicki, 33, "was to put the family in a car and drive off a bridge. You can't just sit there and watch your kids go through this."
But Vicki Margus did not drive off a bridge. Nor did she and Brad just sit and wait. Instead they battled their boys' disease by educating themselves—by devouring medical texts and contacting the world's top specialists—much as did Au-gusto and Michaela Odone, the models for the Nick Nolte and Susan Sarandon characters in the movie Lorenzo's Oil. Plus they created the A-T Children's Project—a foundation that funds research toward finding a cure. "Even if the cure doesn't come in time for our kids," says Vicki, "there's a lot of kids out there who will benefit. But my dream is that my kids are cured and that down the road, when they become adults, because of everything they've been through, they become these incredible, incredible people."
Vicki Hiebner met her husband Brad, now 34, at Harvard Business School in the fall of 1984. A newly arrived MBA student, Brad noticed the microcomputer coordinator who was setting up a computer system at the school and began his pursuit after Vicki spoke to one of his classes about electronic-mail software. Says Brad with a grin: "I sent her an e-mail note that said, 'Just testing out my electronic-mail skills.' " A couple of days later, Vicki replied, "Feel free to practice your electronic-mail skills with me anytime."
By 1986 they were married, and Brad bought and ran a shrimp-processing operation, Kitchens of the Oceans, with his father, a former food executive with Heinz. Cole was born in 1987, a fiery redhead. Jarrett showed up a year later and Quinn in 1990. "We had all three boys in diapers at one point," says Brad.
Brad's company was putting shrimp on tables of state at both the U.N. and the White House. He and Vicki had a luxurious, sprawling home and three adorable children. They could not have asked for more. Then they noticed something about Jarrett. He seemed clumsy at times, falling down or bumping his head when he went around corners. Their pediatrician told the Marguses not to worry. But six months later, when Jarrett was 2, a pediatric neurologist described the behavior as ataxia—an inability to coordinate voluntary movements. Stating the problem was easy; finding out what caused it was vastly more difficult. "It could have been a million things: muscular dystrophy, cerebral palsy," says Vicki. "We just went home with our minds racing wildly."
After a year of false leads—and painful tests—Jarrett's affliction was still a mystery. Doctors theorized that it was an isolated birth defect and predicted that Jarrett would not get any worse. In fact, says Vicki, "he seemed to be getting better. He wasn't going to be a great athlete, but he'd live a perfectly normal life."
Then 15-month-old Quinn began to stagger. Now the Marguses knew the problem was genetic, and the testing began again. Finally, in May 1993, they got an answer. Dr. Jean Aicardi, a renowned pediatric neurologist from London, was visiting Miami Children's Hospital, and at the recommendation of the Marguses' neurologist he observed the boys. "He got them to play in front of him," says Brad. "Then he said, 'This looks like ataxia-telangiectasia. I assume you've done the test. What were the results?' The doctors all looked at their feet."
Not only had they not done the test, they had never even seen the disease before. When the blood test came back positive, the Marguses began focusing their prodigious energies on A-T. They learned it was a disease that destroys motor control, including speech and eye-tracking movements. A-T patients are usually in wheelchairs by age 8, and gradually lose their ability to read and speak. There is an increased risk of cancer, and many victims suffer from immune disorders.
Even then, the Marguses did not give in to despair. "We were like sponges," says Vicki. "Never in our lives had we been so motivated to learn about a subject." Brad questioned the head of genetics at National Institutes of Health and was tutored via fax by a professor of genetics at Tel Aviv University. Soon they felt they were ready for the second phase—the formation of an organization to find a cure.
In October 1993, they launched the A-T Children's Project with $100,000 of their own money, using their dining room as headquarters. They asked David Cox, a respected Stanford University geneticist, to be its scientific director. Cox was skeptical at first. He is often approached, he says, by parents who are simply seeking an outlet for their pain. "But Brad was different," he says. "In life, there are people who talk about things and people who get things done. Brad gets things done."
With Cox's name at the top, Brad could assemble a board of top-notch scientists to review research grant applications, and his businesslike approach has enabled him to raise close to $1 million for the project. "Brad is just unbelievable," says Dr. Francis Collins, director of the NIH's National Center for Human Genome Research. "He has done more for his A-T foundation in a year than many foundations have been able to achieve in a decade."
Until recently the Marguses kept quiet about their boys' affliction. They went public only when they realized their silence was undercutting their fund-raising. After Brad appeared last March on Larry King Live, they began getting calls and letters from other parents whose kids have A-T. "It was a positive thing," says Vicki. "We can give some direction to all of them." But the Marguses also hear from parents of children who are older than theirs and much worse off. "Sometimes it's just like sticking a knife in your heart," says Vicki.
The Marguses have not yet had to explain the illness to Quinn and Jarrett, but they know that day will come. "They don't really see a difference between themselves and other people right now," says Vicki. In fact, just now the boys are in what may be the most trouble-free period of their lives—and Brad and Vicki take advantage of it. There are trips to Disney World, days spent fishing, afternoons at the movies. "I may not get home in time for the boys' dinner," says Brad. "But I always make it in time to get into a wrestling match before bed."
"We just treat them very normal," says Vicki. "If they fall in the driveway, we say, 'Just get up and dust yourself off.' You can't always be running around trying to protect them, making them wear kneepads all the time. At some point, it may be necessary. But for now, let them be. This may be the best time of their lives here."
Vicki and Brad do not waste much time feeling sorry for themselves either. In fact, Vicki says she is thankful for her lot. "I don't feel like these are our last days," she says. "I still feel very fortunate that we have these bright, happy boys who are inseparable from each other. This is the one life we have, and nothing is going to change that. I feel optimistic."