When Karen Killilea was born in 1940, she was three months premature and weighed less than two pounds. She spent her first nine months in a neonatal intensive care unit.
When she finally returned to the family home in Rye, N.Y., her parents noticed that her limbs were especially stiff, she never rolled over in her crib and she didn’t reach for toys that were dangled in front of her. Babies born so early rarely survived in those days. The doctors told Karen’s parents to institutionalize her and get on with their lives.
That was the last thing that James and Marie Killilea (pronounced KILL-ill-ee) would do. Far from forgetting about Karen, they scoured the United States and Canada for medical specialists who could help her. They saw more than 20, all of whom said that Karen’s case was hopeless. One told them that in China, a child like Karen would be left on a mountaintop to die.
They finally found a doctor in Baltimore who recognized Karen’s intelligence, saw that she was aware of her surroundings and determined that she had cerebral palsy. With tireless dedication, her family spent at least two hours every day for the next 10 years helping Karen move her limbs back and forth, and eventually she triumphed over her prognosis.
By her early teenage years, she was walking with crutches, swimming, typing and going to school.
And she lived to be 80.
She died on Oct. 30 in Port Chester, N.Y., in Westchester County, just north of New York City. Her sister Kristin Viltz said the cause was a respiratory condition that led to heart failure.
Marie Killilea told the world about her daughter in two best-selling books, which were among the first to describe in detail the challenges of living with a severe physical disability and were an inspiration to many families in similar circumstances.
The first, “Karen” (1952), showed how she and her family had worked to overcome the odds against her.
Among the glowing reviews for “Karen,” which was translated into several languages, was this from Saturday Review: “Extraordinary is the word to be used first, last and repeatedly about this book. Anyone who meets Karen, even on paper, will postpone resigning from the human race.”
The sequel, “With Love From Karen” (1963), followed Karen into young adulthood. Marie Killilea also wrote “Wren” (1981), a version of “Karen” for children.
Karen Killilea worked for four decades as the receptionist at the Trinity Retreat House in Larchmont, N.Y. She traveled to Italy twice, meeting semi-privately both times with Pope Paul VI.
She was determined to show that her disability had not limited her. Among the activities she pursued was conducting obedience training for dogs. She had a special affection for Newfoundlands, which were much larger than Karen, who was barely four feet tall and weighed only 65 pounds.
“She was the most fiercely independent person you could imagine,” Ms. Viltz, her sister, said in a phone interview.
She never considered herself “handicapped,” her sister said, instead calling herself “permanently inconvenienced.”
Karen Ann Killilea was born on Aug. 18, 1940, in Rye. Her father was an executive with the New York Telephone Company; her mother was a homemaker.
Karen attended the Academy of Our Lady of Good Counsel Elementary School in nearby White Plains. With the support of her older sister, Marie, who was a few grades ahead of her at the same school, Karen earned good marks and graduated from the eighth grade in 1959. She attended the academy’s high school partway through the 10th grade but stopped after Marie left for college.
“Karen was a legend,” said Sister Laura Donovan, a former principal of the high school, who was also a student there, a few years behind Karen.
“The way I heard it, this young woman had great courage and determination,” Sister Laura said in a phone interview. “She came to a non-handicap-accessible school, and I never heard anyone say she ever wanted special treatment.”
As Karen’s parents began lobbying in Albany for the rights of the disabled, they met many other parents of children with disabilities who were desperate for information and eager to share their own experiences. This led to the formation of what is now called Cerebral Palsy of Westchester. Marie Killilea later founded, with other parents and volunteers, the organization that became known as the United Cerebral Palsy Association.
By the time her parents died (her mother in 1991, her father in 1994), Ms. Killilea was living independently, first in a rental apartment in New Rochelle and then in a condo she bought in Larchmont.
In addition to her sisters, Kristin Viltz and Marie Killilea Irish, her survivors include a brother, Rory Killilea.
After the books appeared, Karen and Marie Killilea were inundated with mail from all over the world and answered at least 15,000 letters. Some were addressed simply to “Karen, U.S.A.,” and still arrived.
Many wrote to thank the family for telling their story and to say that it had inspired them to become nurses, or physical or occupational therapists. Some readers even appeared on the family’s front porch, so eager were they to meet this “miracle child,” as her mother called her, and tell of their own situations.
In later years, readers joined online discussions about her. Many, noting that the book “Karen” was about Karen and not by her, longed to hear her own account in her own voice.
But she valued her privacy deeply and never gave interviews or wrote her own book. She turned down almost all invitations to speak, including one from her old school to address the students, Sister Laura said.
Still, her voice emerged to some extent in her mother’s second book. After Karen had experienced the freedom that came with using a wheelchair and decided she preferred it to hobbling around on crutches, which she found to be painful, her mother quoted her as saying:
“No more will I be a drab, slow little sparrow that hops around with his head down. I’ll be free, really free. I’ll be an eagle with my face to the sun.”