Third Frohnmayer daughter dies of rare genetic disorder
EUGENE, Ore. (AP) — Amy Frohnmayer Winn, the last of David and Lynn Frohnmayer’s three daughters, died Sunday, according to her family.
After living her 29 years with the rare disease Fanconi anemia, which killed her two older sisters, she came to the end rapidly, her brother, Mark Frohnmayer, said Monday.
Amy Frohnmayer drove herself to stay fit. She was a runner, who expected herself to stay in half-marathon form always. She’d just finished a second master’s degree at Oregon State University’s Bend campus.
But the Friday before Memorial Day this year, Amy got a devastating diagnosis: acute myeloid leukemia, a disease that fells many Fanconi anemia patients.
On that Sunday, Amy flew to Minnesota for an experimental bone marrow transplant.
Four days later, in a hospital room wedding, she married Alex Winn, a Bend pharmacist.
“I savor our time together,” he said that day.
Two days after the wedding, she underwent an expanded umbilical blood stem cell transplant, which increases stem cells over the usual protocols by a factor of 400, Mark Frohnmayer said. At first it looked like Amy would sail through the procedure.
“Six weeks after her transplant, she relapsed with leukemia,” Mark Frohnmayer said. “When you relapse in six weeks, it’s a really bad sign.”
She was on a seesaw of medications. Doctors stopped anti-rejection drugs so her immune system could fight off the leukemia. But then she was stricken with graft-host sickness, so they’d restart the anti-rejection drugs.
Amy suffered a bout of severe internal bleeding in mid-September followed by pneumonia with severely disrupted breathing. Mark Frohnmayer said his sister was a woman of extraordinary grit and gratitude.
“She remarked how lucky she was — 24 hours before she died — just to be surrounded by friends and family,” he said. “She said we all just need to love on each other like nobody’s business.”
Amy Frohnmayer died early Sunday morning at the Knight Cancer Institute at Oregon Health & Science University in Portland.
“Surrounded by her devoted family, Amy passed away at 3:45 this morning,” Lynn Frohnmayer wrote on the blog. “To say that we are all heartbroken, beside ourselves with grief doesn’t adequately cover the excruciating sense of loss we feel. We are only comforted by the knowledge that she was surrounded by her devoted family, and the love in the room was palpable.”
She was the third Frohnmayer daughter to die of complications from Fanconi anemia; Katie died at age 12 in 1991, and Kirsten died at 24 in 1997. Amy outlived the mortality curve the doctors showed her parents; she almost made age 30.
Lynn Frohnmayer is devastated, Mark Frohnmayer said.
“I’m sure you can imagine. She’s in horrible pain with the loss of her third daughter,” he said.
Amy’s father, David Frohnmayer, longtime University of Oregon president, died March 10, 2015, of prostate cancer. He was 74.
Amy is survived by her husband, mother and her two brothers. Neither Mark nor Jonathan are affected by the gene that causes the disease.
Fanconi anemia has been a part of the Frohnmayers’ lives since July 4, 1983, when the eldest daughter, Kirsten, collapsed with her first symptoms.
The Frohnmayer daughters inspired an all-out quest for understanding and treatment for Fanconi anemia, including a campaign in Nova Scotia to detail the family tree and find matching bone marrow donors for the girls’ rare tissue type; the creation of a national bone marrow registry; the formation of a funding agency for research and the identification of 18 associated genes.
The family’s fight against the disease has been featured in countless news stories, in People magazine, in The Atlantic and on CBS’s “48 Hours.”
Besides her tireless work for the Fanconi Anemia Research Fund — writing fundraising letters and attending conferences — Amy’s case contributed to science’s understanding of how to treat the disease that affects as many as 500 children in the United States.
The type of bone marrow transplant was new.
“What the doctors learned through this process will certainly help save the lives of other children,” Mark Frohnmayer said.
Earlier this year, Amy earned a master’s degree in counseling from the Oregon State University in Bend and was named the 2016 distinguished student for “consistently demonstrated excellence in academics.”
“She has already published her work in scholarly journals. She is a dynamic clinician and excels at cognitive behavioral therapy, which is a difficult modality to do at times. Amy possesses a big heart, self-awareness and a sharp intellect,” according to the college.
Frohnmayer attended Stanford University — from 2005 to 2010 — where she earned bachelor’s and master’s degrees in psychology. She graduated from South Eugene High School just before leaving for Stanford.
She was a runner in high school, and she set a goal of running a marathon during college. She succeeded in her sophomore year with a little help from her doctor.
By mile 18, her blood counts fell and the doctor administered glucose shots so she could finish.
“I was kind of doping, but I made it. I did all 26.2 miles,” she told her brother recently.
Amy most wanted to spend her life “accompany people on their paths toward wellness” through her work as a clinical mental health provider.
She said she wanted to work with elderly people, so she could meet “the suffering of others with an unwaveringly open loving heart.”
Information from: The Oregonian/OregonLive, http://www.oregonlive.com