Karen and Marie Killilea: Trailblazers in CP Awareness

March is Cerebral Palsy Awareness Month and at Enabling Devices, we believe that one of the best ways of raising awareness is through books! Few books did more to raise awareness about CP and the potential of people with CP than the 1952 best-seller, “Karen” by Marie Killilea. Killilea also published a sequel called, “With Love from Karen” in 1963 and “Wren,” a children’s version of Karen’s story published in 1968.

Written long before the Americans with Disabilities Act and decades before people with disabilities had the benefits of technology, at a time when doctors routinely told parents whose children were born with CP to institutionalize and forget about them, “Karen,” which tells the true story of Karen Killilea, was nothing short of groundbreaking.

When she was born in 1940, Karen Killilea was three months early and weighed less than two pounds. As she failed to reach developmental milestones, Karen’s parents consulted with doctors who were unable to provide a clear diagnosis but were overwhelmingly pessimistic about the little girl’s prognosis. According to Marie Killileas’ 1991 obituary, doctors told her and her husband James that their daughter’s “case was hopeless”. They said that “Karen had no intellect, could never learn to walk or communicate with others.” But Marie knew they were wrong.

It took several years, but eventually, Marie and James learned that Karen had CP. Against medical advice to institutionalize their daughter, they kept Karen, their third child, at home with the family in Rye, N.Y., just a few miles away from the headquarters of Enabling Devices! Marie began a tireless effort to find a doctor who could help her daughter. 

A 2006 report compiled by United Cerebral Palsy  says “the Killileas consulted 23 top medical specialists and clinics in the United States and Canada,” before finding a doctor who agreed with Marie, that Karen had potential. The doctor could see Karen was intelligent and prescribed a home exercise regimen, a highly unusual practice in those days. Marie worked with Karen daily for 10 years and Karen eventually learned to walk with the aid of crutches, to swim and to write.

When Marie wasn’t busy providing therapy for Karen, caring for her other three children and writing her memoirs, she was advocating for people with cerebral palsy. Marie cofounded the Cerebral Palsy Association of Westchester as well as a national CP organization that later became United Cerebral Palsy. 

According to the UCP report, Karen “received letters from all over the world and once estimated she had answered 15,000 or more.” A quick internet search reveals that “Karen” still has many fans, some of whom were inspired to become nurses, and physical and occupational therapists because of their love of the books. 

To the dismay of some fans, who were interested in knowing more about Karen’s story, she was intensely private.

But the UCP report did provide some comforting news.

“Karen lives in an accessible apartment in New Rochelle, N.Y. and works [as a receptionist] at a retreat house for priests run by Catholic monks,” the report reads. “Karen's relatives shared with us that Karen is today thriving independently, living and loving life better than many of us could ever dream of.”

“Karen” and “With Love from Karen,” are available on eBook and used print copies may be found on eBay and elsewhere online. Though some may find them dated, they are well worth a read.