When Karen Killilea was born in 1940, she was three months early and weighed less than two pounds. She spent her first nine months in a newborn intensive care unit.
When she finally returned to the family home in Rye, New York, her parents noticed that her limbs were particularly stiff, she never rolled over in her cot, and she did not reach for toys that dangled in front of her. Babies born this early rarely survived back then. Doctors told Karen's parents to institutionalize her and get on with their lives.
That was the last thing James and Marie Killilea (pronounced KILL-ill-ee) would do. Far from forgetting Karen, they went to the United States and Canada to seek medical specialists who could help her. They saw 20+, all of whom said Karen's case was hopeless. One told them that in China, a child like Karen would be left behind on a mountain top to die.
They eventually found a doctor in Baltimore who recognized Karen's intelligence, saw that she was aware of her surroundings, and discovered that she had cerebral palsy. With relentless dedication, her family spent at least two hours each day for the next 10 years helping Karen move her limbs, and eventually she triumphed over her prognosis.
In her early teen years, she walked on crutches, swam, typed, and went to school.
And she was 80 years old.
She died on October 30th in Port Chester, New York, in Westchester County, north of New York City. Her sister Kristin Viltz said the cause is a respiratory disease that leads to heart failure.
Marie Killilea told the world in two bestselling books about her daughter who was one of the first to detail the challenges of life with severe physical disabilities and who inspired many families in similar circumstances.
The first, "Karen" (1952), showed how she and her family had worked to overcome the odds against them.
Among the glowing reviews for “Karen” that has been translated into several languages was Saturday's review: “Extraordinary is the word that is used first, last, and repeatedly throughout this book. Anyone who meets Karen on paper, too, will postpone resigning from humanity. "
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 as a receptionist at Trinity Retreat House in Larchmont, New York for four decades. She traveled to Italy twice and both times met semi-privately with Pope Paul VI.
She was determined to show that her disability hadn't limited her. Her activities included conducting obedience training for dogs. She had a particular preference for Newfoundland dogs, who were much taller than Karen, who was barely three feet tall and weighed only 65 pounds.
"She was the most independent person you can imagine," said Ms. Viltz, her sister, in a telephone interview.
She never considered herself "disabled," her sister said, calling herself "persistently harassed" instead.
Karen Ann Killilea was born in Rye on August 18, 1940. Her father was an executive with the New York Telephone Company; Her mother was a housewife.
Karen attended the Notary Lady of Good Council Elementary School in the nearby White Plains. With the support of her older sister Marie, who was a few grades ahead of her at the same school, Karen received good grades and graduated from eighth grade in 1959. She attended the academy's high school in the middle of 10th grade, but stopped after Marie went to college.
"Karen was a legend," said Sister Laura Donovan, a former high school headmistress who studied there for several years after Karen.
"From what I heard, this young woman had great courage and determination," said Sister Laura in a telephone interview. "She came to a non-disabled school and I never heard anyone say that she ever wanted special treatment."
When Karen's parents in Albany began advocating for the rights of the disabled, they met many other parents of children with disabilities who were desperate for information and wanted to share their own experiences. This led to the formation of what is now cerebral palsy in Westchester. Marie Killilea, along with other parents and volunteers, later founded what became known as the United Cerebral Palsy Association.
When her parents died (her mother in 1991, her father in 1994), Ms. Killilea was living independently, first in a rented apartment in New Rochelle and then in an apartment she bought in Larchmont.
Her survivors include her sisters Kristin Viltz and Marie Killilea Irish, as well as a brother, Rory Killilea.
After the books appeared, Karen and Marie Killilea were inundated with mail from around the world and answered at least 15,000 letters. Some were simply addressed to "Karen, USA" 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 therapists or occupational therapists. Some readers even appeared on the family porch, eager to meet this “child prodigy,” as their mother called her, and to share their own situations.
In later years readers took part in online discussions about them. Many who noticed that the book Karen was about Karen and not about her longed to hear their own account in their own voice.
But she really valued her privacy and never gave interviews or wrote her own book. She declined almost all invitations to speak, including one from her old school to address the students, Sister Laura said.
Still, her voice appeared to some extent in her mother's second book. After Karen experienced the freedom that came with using a wheelchair and decided that she would prefer to hobble around on crutches, which she found painful, her mother quoted her as saying:
“I won't be a dull, slow little sparrow jumping around with my head bowed. I'll be free, really free I will be an eagle with its face turned towards the sun. "