- Paperback: 240 pages
- Publisher: Thomas Nelson; 1 edition (July 30, 1997)
- Language: English
- ISBN-10: 1558535527
- ISBN-13: 978-1558535527
- Product Dimensions: 6 x 0.7 x 9 inches
- Shipping Weight: 12.8 ounces (View shipping rates and policies)
- Average Customer Review: 120 customer reviews
- Amazon Best Sellers Rank: #69,965 in Books (See Top 100 in Books)
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Alex: The Life of a Child Paperback – July 30, 1997
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Frank Deford is an excellent and prolific writer of both fact and fiction and who makes personal to the reader every event he shares of Alex's life and death. Especially her death. Perhaps he didn't mean to make her death more poignant than her life, but it would be impossible to play it down. He paints nearly every hour of that last day of her life so vividly that I wondered if he was taking notes as it happened; he did, after all, keep a personal journal (no, I don't believe that he kept a notebook by the side of his dying baby's bed, only that he wrote it in such detail that it was as if he had done so.) These days, most people who die of lengthy, drawn-out illnesses die peacefully, only semi-conscious, doped up to the gills against unbearable pain. But though Alex might have been in pain, death did not take her peacefully. She didn't fight it, but neither did she go quietly. She was awake and aware to the very last second of her short life. As he said, she had spent so much of her little life dying that she wasn't about to miss the final act when it came. It was difficult enough to read when I wasn't yet a parent. It became even more meaningful after I became a parent. And then still more, when my daughter was diagnosed with a brain tumor.
Alex's story made me aware of cystic fibrosis, to the point that I felt compelled, once I was gainfully employed, to begin contributing a few dimes a year to the CF Foundation. It's never been very much, but neither has the foundation ever returned an uncancelled check to me claiming it was too little to accept.
Other parts of the story make strong impressions, such as her ability to act and mimic anything she saw on a TV or movie screen; she could have been an actress, or maybe a dancer, as she loved to twirl around with grace and energy, "imaginating" a world in which no one suffered pain or death or had to do therapy. The deep and serious discussions with people outside of her family circle regarding death, God and Heaven and her love of jokes and humor and silliness. Her obsession with beauty and jewelry, and the outrageous insensitivity with which she was treated several times by cold and heartless doctors. Fortunately, I can say that today, through my own experience with doctors and hospitals, the medical staff in the pediatric departments treat their young patients with great respect and compassion.
We could wish that ALL types of childhood ailments were written about as beautifully. There are other illnesses and disabilities that are just as deadly. He states at one point that "some diseases, even some fatal ones, don't put too many demands on the family of the patient." I felt like that wasn't quite a fair statement. If a loved one has a disease, particularly a potentially fatal disease to one's child, the demands of just living day to day with the knowledge that you will never be able to take for granted your child's good health is a pretty difficult burden to carry, not to mention the 'round-the-clock effort devoted to simply making the child comfortable. I do hope that I'm mistaken in his meaning of that statement. I can't imagine he would truly intend to dismiss other fatal illnesses children suffer as being easier to deal with.
But then really, this story isn't really about sick children. It's not even about cystic fibrosis; it is about Alex, and there is only ONE Alex Deford. I know that there is, as he says, no value in losing your child. You don't gain anything meaningful from it. But because the rest of us have had the good fortune to stumble onto his story of Alex, many, many thousands of others have found meaning in their own lives as a result of Alex's life, however brief it was. The CF Foundation has also benefited. So, thank you Alex, for living, and thank you, Frank Deford, for sharing your daughter with the rest of us.
Alex: The Life of a Child was written by her father, and published in 1983. I have not read any other books or articles by Frank Deford; however, my guess is that this is the most poignant story he has every told.
As a frail baby, when Alex was diagnosed with CF, she was not expected to live more than 5 months, but she was a fighter who struggled to be as normal as possible, never using her disorder as an excuse for not participating. Many of her childhood friends were influenced by Alex and are practicing the field of healthcare. Over the years this book has been used in schools to educate children as young as 10 years old. Having never met her, other people inspired by this book or the movie, visit her grave site and have joined the plight seeking a cure for CF.
According to my research, CF is primarily a disease that is much more prevalent with Caucasians and "over 90% of the affected infants now survive beyond one year."
Studies show "the life expectancy of cystic fibrosis patients has been increasing over the past 40 years. Life expectancy of individuals with adequate pancreatic function can be more than 50 years."
Alex lived, loved and set an example for the ages. She was a poster child for CF. She was an angel of a daughter. Her brother, Christopher was her idol. More than anything she wanted to live and be free of CF. She worried about the impact of her death upon her loved ones.
She lives on in the hearts and minds of those who know her story. Alex would be 41 now, had she survived, yet she will forever be the brave little girl who lives in the pages of this unforgettable story told by her father in a manner that will squeeze your heartstrings and make your eyes moist and glisten with sadness, joy and awe.
Celebrate and enjoy the life of an angel!