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People Top 5
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- January 11, 1988
- Vol. 29
- No. 1
A Desperate Quest into a Family's Past
With Two Daughters Threatened by a Rare Genetic Disease, An Oregon Couple Searches the Family Tree for Bone Marrow Donors to Save Their Children's Lives
Five years ago David Frohnmayer, now 47, and his wife, Lynn, 45, seemed almost aglow with success. A Harvard graduate, a Rhodes Scholar and a respected lawyer who had argued six cases before the U.S. Supreme Court, he was in his first term as state attorney general. She was a nationally recognized authority on foster care, with a master's degree from Smith College, who until recently worked for the state's Children's Services Division. Their three children, Kirsten, now 14, Katie, 9, and Mark, 13, were blond and handsome, full of their parents' verve and intelligence. But on July 4, 1983, Kirsten collapsed with the first symptoms of the illness that now threatens her life. After tests were conducted on the other children, the Frohnmayers learned that Katie had also inherited the disease. "I was raised to believe that if you do the right things, certain things happen," says Lynn. "We thought we had these perfect children. Life was just swimming along. It was a staggering blow to find it wasn't so."
Though shaken by the diagnosis, both David and Lynn decided they would do everything within their power to give Kirsten and Katie a chance at a full life. "I don't believe in being a victim," says David, "and neither does my wife." But it would take more than a family's fighting spirit to beat FA, as the disease is called, if it could be beaten at all. Borne by a recessive gene, FA can be passed through families for centuries, never appearing unless two carriers come together as parents. When the Frohnmayers married in 1970, neither of them were aware that they carried the potentially lethal gene or that the statistical risk of their producing a child with the disease was one in four. After their children's illness was diagnosed, they learned how devastating the disease can be. According to geneticist Arleen Auerbach, of New York's Rockefeller University, the onset is marked by bruising and fatigue, progressing to aplastic anemia and sometimes to leukemia. If victims live long enough, they also tend to develop other cancers, but 50 percent die by the age of 10, and most of the rest before 20. Determined to find out everything they could about FA, the Frohnmayers called doctors and researchers, searched the medical literature and contacted drug manufacturers. They discovered that hormonal treatments might retard the early progress of the disease, but only a bone marrow transplant offered any possibility of a cure.
A transplant, however, would require donors whose tissue matched that of the recipients almost exactly, and both Kirsten and Katie had inherited their father's extremely rare tissue type. After a search of 300,000 names in donor registries turned up nothing, doctors suggested that a trace of David's mother's family might lead to a match. In 1986 David went to his mother, 78, who had been born MarAbel Braden, and began piecing together his family tree. His first breakthrough came when he learned from old family letters that in the mid-19th century the family homestead had been in Wayzata, Minn. Locating a Minneapolis phone book, he called the first Braden listed and spoke to a man who referred him to his aunt. She turned out to be David's third cousin, Shirley Braden Hedican, and with her help he learned that his great-grandparents had come to Minnesota from Nova Scotia in 1868.
Unfortunately, tests of some 50 cousins from the Minneapolis area failed to turn up a match for either Kirsten or Katie. "We knew the next step was to go to Canada," says Lynn, "but we didn't know how we'd find the money to do it." Their insurance was exhausted, but when retired admiral Elmo R. Zumwalt Jr., whose son suffers from leukemia, heard of the Frohnmayers' plight, he raised $50,000 from private donors and foundations to defray the cost of the brief trip and the costly research and medical tests. Last October David and Lynn flew with Kirsten and Katie to Nova Scotia, where the people, says David, "responded so immediately, so genuinely, so personally, that it made you feel as though you came to a family reunion just a little too late."
Through press conferences, radio interviews and meetings with potential relatives, the Frohnmayers spread word of their search throughout the province. More than 100 possible relatives turned up at the Middle Musquodoboit Bicentennial Theatre and the Colchester Historical Society Museum to meet the Frohnmayers. Meanwhile, Halifax medical engineer Allan E. Marble, a genealogist who has been exploring Nova Scotia bloodlines for 30 years, was organizing an effort to trace other potential donors, who could then be tested by the local Red Cross. The Frohnmayers met one family member when they stopped at a gas station. David noticed that the owner was Tom Parker, a name he'd seen in his family tree. Frohnmayer introduced himself and discovered he and Parker were fifth cousins. "He had a firm handshake," says David. "I recognized that right away. He looked me right in the eye and asked what he could do to help."
Red Cross officials estimate that 1,500 relatives will have to be identified before tissue matches can be found for Kirsten and Katie, and genealogist Marble has vowed to produce them by March. Meanwhile, the Frohnmayers have returned to Eugene to wait and carry on with their lives. It hasn't been easy, especially for two strong people who are accustomed to controlling their destiny. "There's been an enormous amount of frustration," says David, "because I'm used to trying to command a universe where, with decent merit and hard work and lots of guts, you can tilt things your way." Adds Lynn: "I'm always thinking, 'What can we do to make this different? How can we possibly change this outcome?' "
Kirsten and Katie, for their part, don't seem consumed by self-pity. "Yes, I've had my moments, but basically I don't feel sorry for myself because I've accepted what's happened," says Kirsten. "Sometimes you think this is only happening to you. That's not true. A lot of people have bad things happen to them. But if I pity myself all the time, I'll just get depressed and won't get things done. That's just not me." Kirsten is now an A student and freshman class president at South Eugene High. Katie plays the piano beautifully, is proud of her skiing and tennis, and recently hosted a slumber party for her ninth birthday. Both sisters insist they can defeat FA and complain that their parents worry too much.
"In a way, these things are harder on parents than on children," says Lynn. "It would be easier for me to have a terminal illness than to face a terminal illness in one of them." David concurs. "If I could arrange a trade, I'd do it today," he says. "Lynn and I have already had our chance. We've had full and happy lives." They have also had two more children since Kirsten and Katie's illness was diagnosed. Both 10-month-old Amy and her brother Jonathan, 3, were tested prenatally for FA and came up negative.
If the Frohnmayers' efforts haven't yet yielded a cure for their daughters, their fight against FA has brought benefits. In 1987, after a campaign by David and others, the National Bone Marrow Donor Registry was opened in St. Paul to assist patients in search of transplants. He and Lynn also publish a newsletter for the FA support group they founded in 1985, which now has 65 member families. "Every time we get down a little bit," says David, "we look at Kirsten and Katie and say, 'Gee, they're still alive, you know. And they're in good health. Walking down the street, you wouldn't know the difference.' There are people in our support group whose kids are on their deathbeds. We're thankful for every day."
For now, each day means anxious waiting and a conscious effort by Lynn and David to keep their emotions in check. Phone calls and letters come in daily from all around the country, many offering help or encouragement, but the news the Frohnmayers hope torso desperately has still to arrive. A typical day's mail brings a letter from one of the country's leading pediatric oncologists. It offers some words of hope about an experimental drug now being tested, but it also contains a mortality curve showing that only 5 percent of FA patients live 20 years past diagnosis. The Frohnmayers are sure Kirsten and Katie will be in that 5 percent. As Lynn sits with Amy in a rocking chair in the living room, feeding her a bottle and smiling proudly, David comes in and stands over her. The room goes quiet and, momentarily pensive, Lynn says, "The one thing that I think about is that we were so unlucky. I mean, one out of thousands of people has this kind of disorder. When bad things can happen out of such a slender possibility, maybe something good can happen too."
- Meg Grant.
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