Alex: The Life of a Child

im a cf victim myself and i think alex was very brave she didnt let having cf get her down and tried to live a life as normal as possible after reading alex i have been able to cope better with my cf and understand it better i try to live as alex lived her life when i do my therapy every day i amuse myself by recalling alex's therapy sessions "not the down ones daddy!" oh i quite agree with alex that the down ones r totally the worse and i can really relate to this story and it makes me glad that someone is writing about cf and making people more aware of the disease

I am perhaps overly sensitive, but there were very few chapters in this book that I managed to read without breaking down and sobbing. Being familiar with Deford's voice from his NPR commentaries makes it all the worse, because as I read it, I heard it narrated in his voice, which made it all the more personal.I had some vague conception of cystic fibrosis before reading this, but no idea just how horrible it really is. The book is written in a very conversational style. Mr. Deford is to be commended for his openness about the full range of emotions he experienced throughout the nine years of his daughter's life.The book is quite short, which turns out to be a mercy. It is one of the best books I have read, but I can't imagine having to read it again.

I can't read this book without crying. Even writing this, I'm using two Kleenexes and a free hand.Frank Deford has my utmost respect for having survived Alex's death. No parent who loses a child ever recovers; "healing" and "closure" are insipid terms that people who've never suffered that loss use to try to cope on behalf of friends or family. Truth is, more couples separate over the death of a child than stay together. Many parents withdraw into depression, or suicide, after the death of a child, especially a small one.But instead of just surviving, which God knows he and his family were entitled to do, Frank Deford wrote this beautiful tribute to Alex. It is marvelous. Alex lives in this book, and when she dies there is a grace to Deford's prose that evokes the presence that used to be. A sweet, stubborn, keenly intelligent and high-spirited little girl, Alex is a surprise on every page. How could anyone have lived with a child that alert to her fate, and so determined to face it on her terms, and not gained strength from her?I can't tell Alex's story better than her father did, so find the book and read it. If the death of a child saddens you, then remember: the book is not about her death, but her life and how she lived it.

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. Although I can't say for certain what motivated Deford to write this book, I can say that it forever seared the memory of Alex Deford in my heart and soul and showed me the power of her spirit - and that of her father. Few writers are as riveting to read as Frank Deford.

I would like to thank Frank Deford for his bravery in sharing his beautiful daughter with the world. I cannot begin to say how much she has touched my life. They say there are angels masquerading as people here on earth. If this is true then Alexandra was definitely one of them. I first got to know her through the TV movie about her life. Her light was so bright it was nearly blinding. She grabbed my heart and never let go. Since then I have read her story several times. Because of her inspiration, I have, for the last 10 years, done charity walks for the disease. In hopes that some day children like her won't have to suffer. In hopes that someday her wish will come true. I feel blessed to have even a small piece of her and her inspiring, courageous life. She touched many in life and continues to do so even in death. I hope one day to have a daughter with a spirit as bright as the one within Alex. And in her memory, her beautiful name as well. Thank you Alex.