Alexandra Deford, a precious and precocious girl, was just eight years old when she died in 1980 following a battle against the debilitating effects of cystic fibrosis, the number-one genetic killer of children. Her poignant and uplifting story touched the hearts of millions when it was first published and then made into a memorable television movie. A new introduction contains information on the latest cystic fibrosis research, and a touching postcript reveals how the Deford family came to terms with the loss of Alex.
Whenever he speaks, sportswriter Frank Deford knows people will bring articles for him to sign. But what makes him happiest is when someone attends a sports-oriented lecture and brings a copy of Alex: The Life of a Child for him to sign. “Invariably, and happily, there’s usually someone at each appearance who either brings that book or wants to talk about their connection to cystic fibrosis.” Deford says. “It’s tremendously gratifying to me. Rarely does a week go by that I don’t get a letter about that book. People leave things at her grave. They really do. I have people tell me that she changed their lives. It’s terribly dramatic, but they literally say that. I heard from a woman who became a pediatric nurse after reading the book. Hearing from people like that means more to me than anything.”
In 1972, Deford’s five-month-old daughter Alexandra was diagnosed as having cystic fibrosis, an always-terminal, degenerative lung disease; expected to live only two years, she died in 1980, just over age eight. And here journalist/novelist Deford relives the year-by-year anguish for himself, wife Carol, and son Chris–while emphasizing, perhaps to a mawkish degree, Alex’s near-saintly courage, sprightliness, charm, and humor. (“”Maybe I–we all–survived because however impossible, however appalling it was that our child was dying, I could sometimes still see the whimsy that forever cloaks the pain and the hopelessness of life.””) He recalls the twice-a-day physical therapy–very painful for Alex–which the parents had to administer, knowing that it was at best postponing death. He remembers all the happiest family excursions, the funniest father/daughter moments, increasingly shadowed by Alex’s growing awareness of her condition. (“”Oh, Daddy, wouldn’t this have been great?”” she said after one wonderful time.) He details the special marital/family tensions created by Alex’s situation, her mostly joyful but occasionally traumatic relationships with schoolmates (especially when her illness began to affect her appearance), his own emotional/spiritual wrestlings. While saluting some doctors and nurses, he bitterly records the insensitive residents and practices at some hospitals–where Alex had to spend more and more time as her illness caused collapsed lungs and increasing pain, coughing, weakness, and hemorrhaging. And, with the end clearly imminent, there’s a long deathbed sequence at home–Alex now knowing, and, to some degree, accepting her fate. . . and believing in Heaven. (“”Why me, Mother?”” she asked. Carol answered: “”I think maybe. . . because God knew that you would be the best at showing other people how to live and how to be brave.””) Far more slickly written than Terry Pringle’s This is the Child (p. 292), with an ironic, occasionally saccharine playing on the heartstrings that will put some readers off; but plain and affecting for the most part, concentrating on the emotional–rather than the medical–ordeal.
I’ve never forgotten this book and have re-read it many times. Deford somehow manages to show how devasting cystic fibrosis was to his daughter, how it sapped her energy and stole so much normalcy from her life. At the same time, he shows how Alex Deford’s spirit remained shining so much of the time, serving as an inspiration to those who loved her and who were forced to bear witness as the disease invaded her body. This book pierced my heart and soul and showed me the power of Alex’s spirit – and the enduring love of her father. Few writers are as riveting to read as Frank Deford.
This is one of the most influential, meaningful books I read as a young girl. It was the first time a book ever made me cry, and I’ve seldom been touched so deeply by a story since. I read it many times, and it never lost its impact. I still think of Alex to this day, as an adult; especially now that I have my own children. The memory of her father’s account of her life is very vivid, years later.
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I have read this book a few times and every time I read it, it makes me appreciate life and how beautiful it is to be healthy. This book has taught me that we take our bodies for granted and harm it when there are people whose only desire is to be healthy. It made me really wonder about my childhood and what I would have done if I had been in this little girl’s position. People should read this book because it will provide a different perspective to this situation and how a father dealt with the pain and loss of his daughter. It was expected, but what I really liked about the book is how he provides information about cystic fibrosis and how it affected the child’s body, I also liked how he made it so personal and touching to the heart. He did not detract from the topic at all throughout the whole book, he talked about the experiences they had with his daughter and about cystic fibrosis, that’s it. All in all, I really liked the whole book and I really hope to meet this charming little girl in heaven someday. She had an optimistic look on her life, and at her young age she understood what it is to love life. I believe this book is appropriate for people ages 15 and up because they will be the ones who really understand the emotion that fills the book from cover to cover.