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Rosemary Quigley, wrote of living with cystic fibrosis

Rosemary Quigley, 33, was a medical ethicist who wrote poignantly about living with cystic fibrosis and undergoing a double lung transplant. She died of double pneumonia Monday at Massachusetts General Hospital, five months after the procedure.

Ms. Quigley was "remarkably spirited and inquisitive and engaged in other people's lives," her cousin Mary T. Marshall of Boston said yesterday.

A sprightly woman with reddish-brown hair, she was born with cystic fibrosis, a genetic disorder that causes the body to produce an abnormally thick, sticky mucus that clogs the lungs and leads to life-threatening infections.

"As a child, I was always conscious of my mother lingering at the bedroom door, watching my chest rise and fall as I rested," she wrote in a story published in Boston Review in January 1991. "Now, as I fall asleep, I too am tormented by breath. Every wheeze and restriction fills me with dread, making the passage of deep breaths even harder. Some days I am too exhausted having lived to pay attention: I am grateful that I still have these days."

She had an unusual perspective on the fund-raising efforts to fight the disease.

"The Cystic Fibrosis Foundation sells thick red candles, admonishing passersby to 'give the breath of life,' " she wrote. "The mode of promotion is ironic to CF sufferers, to whom flaming tapers on birthday cakes present an annual pulmonary function test."

In 1989, when the genetic cause of cystic fibrosis was discovered, it gave her a new perspective. "Ultimately we are all casualties of nature, and we will increasingly know the genetic flaw inciting our death," she wrote. "I am a newly discovered and endangered species: that which flourishes in a productive third decade, constantly aware of no guarantees from modern medicine."

A graduate of Acton-Boxborough Regional High School and Harvard College, Ms. Quigley earned a law degree and a master's degree in health management and policy at the University of Michigan. While in college she read about the first proposed gene therapy for cystic fibrosis. "I felt more somber than elated," she wrote, "the promise of discovery discounted by a fear of disappointment."

While in Michigan, Ms. Quigley was a staff member of the Governor's Commission on Genetic Privacy. She investigated ethical decision-making relating to genetic illnesses in Great Britain, Ireland, and the Netherlands on a Trustman Traveling Fellowship.

"Hope is my currency, what I offer in exchange for their help," she wrote, referring to parents she interviewed in Europe who had discovered that their children had cystic fibrosis.

For the past three years Ms. Quigley was an assistant professor of medical ethics and health policy at Baylor University, where she helped write a medical consent form. "She thought she would be effective given her own personal history and extraordinary life-threatening illness in trying to assist others in teaching and making decisions in a hospital environment, " said her cousin.

Last year she was one of three winners nationally of a three-year Greenwall Foundation Award for medical ethics research.

In a journal published in Slate Magazine in March, Ms. Quigley wrote of getting a phone call at 5:30 a.m. on Feb. 2 notifying her that lungs were available and a double lung transplant would be conducted in Texas Medical Center.

"During my years of decline with CF, I suffered profound fear of a transplant because I didn't want to die in surgery or in severe complications immediately thereafter," she wrote. "I also thought I would be overwhelmed by the necessary circumstances of receiving lungs that someone else must die."

She gamely endured the extensive regimen of medicines and medical procedures before, during, and after the transplant. It gave her a new lease on life. "Realizing I can breathe when I am walking and talking, I stop in my tracks," she wrote. "My colleagues marvel that they can no longer detect respiratory symptoms."

In 2001, when Ms. Quigley was living in Portland, Maine, clerking for Judge Kermit Lipez of the US Court of Appeals for the First Circuit, she met her future husband, Jeffrey Harris. They lived in the same apartment building and had "Save Fenway Park" stickers on their cars.

They were married in Portland in May and moved to Watertown.

Ms. Quigley endured a couple of periods when her body rejected her new lungs and a series of lung infections.

"I'm 33 and counting," she wrote in Slate, "and at this time it is not hard to imagine living much longer than a decade with these new lungs. I don't mean to be greedy, but I think I will always want more life. At the same time, I am grateful to have had as much as I've been given."

In addition to her husband and cousin, she leaves her parents, Mary Beth and Larry of Acton; and a sister, Ann Corkery of Natick.

A funeral Mass will be said at 10 a.m. today in St. Elizabeth of Hungary Church in Acton. Burial will be in Woodlawn Cemetery in Acton.

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