Fragile Innocence: A Father's Memoir of His Daughter's Courageous Journey

Mar 29, 2006

This is a book about the first twenty-one years of a child named Hillary. It tells of her battle to live and her family's struggle to help her survive as best they could, after an evil and still unidentified force robbed her of language at age two, hurtled her into a seemingly endless cycle of brain storms, destroyed her kidneys, and took her to the very brink of death. That is the first half of the story, when life itself was at stake.

The second half is different. While the threats to her life never completely vanished, the latter half is about the process of coming to grips with the damage that had been wreaked and the quest to solve the mystery of what had happened. And it is about the heroic efforts of many people, professionals and friends and a few strangers, to help her reach her potential. Ultimately, it is the story of her deliverance and redemption. And so this is a memoir, biography, mystery, and drama, all centered on a remarkable person who cannot talk or read or understand language, but who has moved and touched almost everyone she has ever met.

Beyond the human qualities, however, this story should be told for an additional reason, one that the author came to realize only gradually over the years. Hillary's case personalizes some of the most daunting ethical issues of medicine that face us today: stem cell research, animal organ transplantation, the politics of human organ donation, genetic manipulation, diagnosis with the human genome map, and reproductive and therapeutic cloning. These issues are seldom considered from the vantage point of the "consumer". Hillary is a potential consumer—and beneficiary—of it all.