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Karen Killilea, 80, Dies; Turned Disability Into Triumph

ADA Sign Depot

January 05, 2021

She refused to be limited by her cerebral palsy. Her story was the subject of two widely read books and became an inspiration to many.

Karen Killilea as a young woman at her family’s home in Larchmont, N.Y., with her dog, Perry. She conducted obedience training for dogs and had a special affection for Newfoundlands. Credit...Edward Lettau, via Killilea family

By Katharine Q. Seelye
Published Dec. 18, 2020
Updated Dec. 21, 2020

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 a skilled nursing facility in Port Chester, N.Y., in Westchester County, having lived independently for many years. 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.

“Karen,” originally published in 1952, was the first of two books Marie Killilea wrote about her daughter. After they appeared, Karen and her mother were inundated with mail from all over the world.

The first, “Karen” (1952), showed how Karen and her family had worked to overcome the odds against her.

Among the glowing reviews for the book, 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” (1954), 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.

Ms. Killilea with Pope Paul VI in around 1968. Throughout her life she was determined to show that her disability had not limited her.Credit...via Killilea family

She was determined to show that her disability had not limited her. Among her activities 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.

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