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, New York, her parents noticed that her limbs were particularly stiff, that she never rolled over in her crib, and that she did not. not grabbed the toys hanging in front of her. Babies born so early rarely survived this time. Doctors told Karen’s parents to institutionalize her and move on with their lives.
It was the last thing James and Marie Killilea (pronounced KILL-ill-ee) would do. Far from forgetting Karen, they searched the United States and Canada for medical specialists who could help her. They saw over 20 of them, all of whom said Karen’s case was hopeless. One of them told them that in China, a child like Karen would be left to die on top of a mountain.
They eventually found a doctor in Baltimore who recognized Karen’s intelligence, saw that she was aware of her surroundings, and determined that she was suffering from cerebral palsy. With tireless dedication, her family spent at least two hours a day for the next 10 years helping Karen move her limbs back and forth, and ultimately she triumphed over her prognosis.
In her early teens, she walked on crutches, swam, typed and went to school.
And she lived to be 80 years old.
She died on October 30 in Port Chester, NY, in Westchester County, just north of New York City. Her sister Kristin Viltz said the cause was respiratory disease which led to heart failure.
Marie Killilea has told the world about her daughter in two bestselling books, which were among the first to describe in detail the challenges of living with severe physical disabilities and have been an inspiration to many families in similar circumstances. .
The first, “Karen” (1952), showed how she and her family had worked to overcome obstacles against her.
Among the rave reviews of “Karen,” which has been translated into multiple languages, was that of Saturday Review: “Extraordinary is the word to use first, last, and repeatedly in this book. Anyone who meets Karen, even on paper, will postpone his resignation from the human race.
The sequel, “With Love From Karen” (1963), followed Karen into adulthood. Marie Killilea also wrote “Wren” (1981), a children’s version of “Karen”.
Karen Killilea worked for four decades as a receptionist at the Trinity Retreat House in Larchmont, New York. She visited Italy twice, meeting twice in semi-private with Pope Paul VI.
She was determined to show that her disability had not limited her. Among the activities she pursued was obedience training for dogs. She had a special affection for Newfoundlands, who was much taller than Karen, who was barely four feet tall and weighed only 65 pounds.
“She was the most fiercely independent person you can imagine,” Ms. Viltz, her sister, said in a telephone interview.
She never considered herself “disabled”, her sister said, rather saying she was “permanently embarrassed”.
Karen Ann Killilea was born on August 18, 1940 in Rye. Her father was an executive with the New York Telephone Company; his mother was a housewife.
Karen attended Academy of Our Lady of Good Counsel elementary school, near White Plains. With the support of her older sister, Marie, who was a few years ahead of her in the same school, Karen got good grades and graduated from eighth grade in 1959. She attended high school at the academy in halfway through 10th grade, but quit after Marie left for college.
“Karen was a legend,” said Sister Laura Donovan, former principal of the high school, who was also a student there, a few years behind Karen.
“From what I heard, this young woman had a lot of courage and determination,” Sister Laura said in a telephone interview. “She came to a school that was not accessible to people with disabilities, and I never heard anyone say that she always wanted special treatment.”
As Karen’s parents began to lobby Albany for the rights of people with disabilities, 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 known as Westchester cerebral palsy. Marie Killilea later founded, along with other parents and volunteers, the organization which became known as the United Cerebral Palsy Association.
When her parents died (her mother in 1991, her father in 1994), Ms. Killilea lived independently, first in a rented 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 came out, Karen and Marie Killilea were inundated with mail from all over the world and responded to at least 15,000 letters. Some would just go to “Karen, USA” and still come.
Many wrote to thank the family for sharing their story and to say that it had inspired them to become nurses, physiotherapists or occupational therapists. Some readers even appeared on the family porch, so eager to meet this “miracle child,” as his mother called him, and share their own story.
Later, readers joined the online discussions about him. Many, noting that the book “Karen” was about Karen, and not through her, yearned to hear her own story in her own voice.
But she deeply valued her privacy and never gave interviews or wrote her own book. She refused almost all invitations to speak, including one from her old school to address the students, Sister Laura said.
Yet her voice emerged to some extent in her mother’s second book. After Karen experienced the freedom that comes with using a wheelchair and decided that she preferred that to hobbling on crutches, which she found painful, her mother quoted her as saying :
“I will no longer be a dull, slow little sparrow hopping around with its head down.” I will be free, really free. I’ll be an eagle with my face turned to the sun.