EUGENE, Ore. (KOIN) — From the time she was a girl, Amy Frohnmayer Winn knew her life could be cut short. The daughter of the late University of Oregon President Dave Frohnmayer and his wife Lynn was one of their 3 daughters who inherited Fanconi Anemia, which can lead to bone marrow failure and cancer.
Amy cherished every moment she was given, her mother, Lynn Frohnmayer recently told KOIN 6 News. “She was just happy. That’s the way she was. A joyous human being, truly.”
The Frohnmayers had 5 children. During the 1980s, they learned all 3 of their daughters had the blood disease, which may affect all systems of the body.
It was “unbelievably devastating news,” Lynn said.
“The question then was what do you do about it? Do you just kind of give up and let things play out the way they will? Or do you try in some way to make a difference?”
In 1989 the Frohnmayers started the Fanconi Anemia Research Fund to find effective treatments and a cure, and to support affected families worldwide.
Two years later, their daughter Katie died at 12 from complications of the disease. Six years after that, daughter Kirsten died of leukemia as a result of Fanconi Anemia. She was 24.
The Frohnmayers pushed on for scientific advancements, both for other families and for their surviving daughter, Amy.
“Somewhere along the line she figured out that ‘Even if my life is going to be short, I’m going to max out on the time I have. I’m going to go for the gusto.’ And she did. She really did.”
Amy graduated from Stanford University and was on her way to earning her second Masters degree in psychology. She became a runner and even did a marathon. Amy was closely monitored by doctors and was doing well.
Until last May.
“We were not expecting it. The doctors were not expecting it,” Lynn said. “All these people following her blood counts, following the health of her bone marrow, no one thought she was on the verge of leukemia.”
Lynn said it was “extremely aggressive and there’s only one thing you can do when you have full-blown leukemia. You have to have a bone marrow transplant.”
Amy went to University of Minnesota Masonic Children’s Hospital where doctors specialize in Fanconi Anemia. It was there she married her fiance’ and remained positive as she underwent treatment.
“But tragically her leukemia came back about 6 weeks after the transplant,” Lynn said. “She again showed signs of leukemia.”
Amy came back to Oregon and to OHSU.
“When she was in the hospital and doing so poorly and her friends all came to see her — and again, this was typical Amy — she said, ‘Look how lucky I am! Every time the door opens it’s another person I love coming to see me.’ And she had no time left at all, but even then she saw the beauty in that.”
Amy died on October 2, 2016, a year-and-a-half after her dad passed away from prostate cancer.
Even though Lynn Frohnmayer said she will “forever be devastated by the losses I have to endure,” she isn’t giving up. Supported by good friends, family and 2 loving sons, her work continues with the Fanconi Anemia Research Fund. Over the past 27 years, more than $35 million has been raised for research.
“I am absolutely incapable of not working on this illness and pushing as hard as I can for better therapies and a cure.”