by Peters D. Willson, Former Vice President for Public Policy (1987 - 2008), National Association of Children's Hospitals, now Children’s Hospital Association
It says something about what an extraordinary woman Katie Beckett became that I was stunned by the news of her death at just 34 years of age. Although I first met Katie when she was a teenager and knew well the enormous and often life threatening challenges she had faced since infancy, it never occurred to me Katie would not lead a long and full life. I took her triumph over great odds for granted, because that's the way she lived her life - she wanted to be like everyone else and often succeeded.
Having worked for children's hospitals for so many years and loved what they do, I can't help but think that Katie's life is emblematic of what an amazingly valiant child, incredibly dedicated family, and world class pediatric providers can do together to stretch the limits of scientific knowledge, human stamina, and spiritual faith. The result: an achievement of what seems to be the equivalent of a miracle - a life saved and fulfilled beyond all hope and expectation.
Of course, Katie was a miracle multiple times over. She not only survived to an age long past when it was thought likely she would succumb. Together Katie and her family transformed the promise of health care for hundreds of thousands of children with serious disabilities and their families. They have benefited from the "Katie Beckett waiver" permitting Medicaid to pay for the care of a child with serious and special health needs at home in the embrace of her loving family instead of confined to a hospital when medically possible. Katie also transformed the lives of people she met everywhere who were inspired by her extraordinary personal example - overcoming disabilities that would have left others dependent to make a life of her own.
But certainly no one was more transformed by Katie than her own mother Julie, who is perhaps one of
the most remarkable, compelling, and effective advocates I ever had the privilege of knowing and working with during my 20 years of advocacy on behalf of the nation's children's hospitals. Julie once told me that as a young woman she had neither experience nor motivation nor example to become involved in advocacy. It was simply not a part of her life in any way. But Katie's need and the love of the whole Beckett family for Katie turned Julie into what I believe is a true-life super hero - a human being of extraordinary acuity, reason, stamina, persuasiveness, grace, faith, and devotion to her daughter. She changed the world, and continues to do so.
When my father died several years ago, one of the condolences that especially affected me was from a friend who never knew my Dad but said that he must have been an exceptional man to have had such a good son. For many years to come, the whole world will know what an exceptional woman Katie Beckett was by the exceptional woman her mother Julie Beckett is. And the whole world also should know what an exceptional mother Julie Beckett is by the exceptional daughter she raised.
My heart, and that of the entire children’s hospital community, goes out to Julie and Katie's father Mark and the whole Beckett family at this time of such great sorrow. We owe them all not only our deepest sympathy in their loss of Katie but also our most profound gratitude.