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Alex: The Life of a Child
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."
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."
240 pages, Kindle Edition
First published January 1, 1983
About the author
Frank Deford
40 books58 followersFrank Deford (born December 16, 1938, in Baltimore, Maryland) is a senior contributing writer for Sports Illustrated, author, and commentator.
DeFord has been writing for Sports Illustrated since the early 1960s. In addition to his Sports Illustrated duties, he is also a correspondent for HBO's Real Sports with Bryant Gumbel and a regular, Wednesday commentator for National Public Radio's Morning Edition.
His 1981 novel, "Everybody's All-American," was named one of Sports Illustrated's Top 25 Sports Books of All Time and was later made into a movie directed by Taylor Hackford and starring Dennis Quaid.
In the early 1990s Deford took a brief break from NPR and other professional activities to serve as editor-in-chief of The National (newspaper), a short-lived, daily U.S. sports newspaper. It debuted January 31, 1990 and folded after eighteen months. The newspaper was published Sundays through Fridays and had a tabloid format.
Deford is also the chairman emeritus of the Cystic Fibrosis Foundation. He became involved in cystic fibrosis education and advocacy after his daughter, Alexandra ("Alex") was diagnosed with the illness in the early 1970s. After Alex died on January 19, 1980, at the age of eight, Deford chronicled her life in the memoir Alex: The Life of a Child. The book was made into a movie starring Craig T. Nelson and Bonnie Bedelia in 1986. In 1997, it was reissued in an expanded edition, with updated information on the Defords and Alex's friends.
Deford grew up in Baltimore, Maryland, and attended the Gilman School in Baltimore. He is a graduate of Princeton University and now resides in Westport, Connecticut, with his wife, Carol. They have two surviving children: Christian (b. 1969) and Scarlet (b. 1980). Their youngest daughter Scarlet was adopted a few months after the loss of Alex.
DeFord has been writing for Sports Illustrated since the early 1960s. In addition to his Sports Illustrated duties, he is also a correspondent for HBO's Real Sports with Bryant Gumbel and a regular, Wednesday commentator for National Public Radio's Morning Edition.
His 1981 novel, "Everybody's All-American," was named one of Sports Illustrated's Top 25 Sports Books of All Time and was later made into a movie directed by Taylor Hackford and starring Dennis Quaid.
In the early 1990s Deford took a brief break from NPR and other professional activities to serve as editor-in-chief of The National (newspaper), a short-lived, daily U.S. sports newspaper. It debuted January 31, 1990 and folded after eighteen months. The newspaper was published Sundays through Fridays and had a tabloid format.
Deford is also the chairman emeritus of the Cystic Fibrosis Foundation. He became involved in cystic fibrosis education and advocacy after his daughter, Alexandra ("Alex") was diagnosed with the illness in the early 1970s. After Alex died on January 19, 1980, at the age of eight, Deford chronicled her life in the memoir Alex: The Life of a Child. The book was made into a movie starring Craig T. Nelson and Bonnie Bedelia in 1986. In 1997, it was reissued in an expanded edition, with updated information on the Defords and Alex's friends.
Deford grew up in Baltimore, Maryland, and attended the Gilman School in Baltimore. He is a graduate of Princeton University and now resides in Westport, Connecticut, with his wife, Carol. They have two surviving children: Christian (b. 1969) and Scarlet (b. 1980). Their youngest daughter Scarlet was adopted a few months after the loss of Alex.
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September 24, 2023
How do you review a book that you have literally and figuratively hugged to your heart for 30+ years?…
Long ago in 1986, a movie was broadcasted one night that drew my interest right away. A little girl named Gennie James, whom I had watched in “Places In the Heart”, was playing the part of a little girl with Cystic Fibrosis. At that time, I knew little about the disease, just that little children sometimes heard the name as “65 Roses.”
After I watched the movie (and threw away my empty Kleenex box that had sustained me), I wanted to know more. About this disease, this killer that stole the breath, and smiles, from this beautiful child
Alex Deford, and so many like her. I was thrilled to find a copy of the book upon which the movie was based, written so lovingly by her father, Frank Deford. I read it, and re-read it over the next few years, until I was afraid it would fall apart.
Fast forward to September 2022:
On September 30th, a dream came true for me. One month before Alex would have turned 51, I stood at her grave and got to wish her a Happy early Birthday. I talked to her, telling her some things about me and my family, including my five dogs. I told her that I had thought of her as a “little sister” and had wanted to meet her for a long time. Her dad, who passed away in 2017, is to her left, so I told him how much his book had meant to me. I put a small pinwheel between the graves, and told Alex to blow and spin that thing hard, because now her lungs could! With tears pouring, I assured her that she would be one of the very first ones I’ll look for when I get to Heaven, her and Chaucer, her dog.
A little crocheted pumpkin is sitting by her headstone now, because I wanted to leave her something, and she always loved that her birthday came with Halloween decorations and fun…
*Yes, you will empty a box (or two) of Kleenex while you read this book, but it will be well worth it. After finishing, you’ll carry Alexandra Miller Deford in your heart with you forever.*
Update On Different Editions:
This is one of the few books I own multiple copies of:
A hardcover, 1st printing/1st edition from 1983, signed by the author
A paperback from 1986, with the actors from the t.v. movie pictured on the cover
A paperback, updated version from 1997, with beautiful photographs, and follow-ups about Scarlet, Christian, and Carol Deford
Long ago in 1986, a movie was broadcasted one night that drew my interest right away. A little girl named Gennie James, whom I had watched in “Places In the Heart”, was playing the part of a little girl with Cystic Fibrosis. At that time, I knew little about the disease, just that little children sometimes heard the name as “65 Roses.”
After I watched the movie (and threw away my empty Kleenex box that had sustained me), I wanted to know more. About this disease, this killer that stole the breath, and smiles, from this beautiful child
Alex Deford, and so many like her. I was thrilled to find a copy of the book upon which the movie was based, written so lovingly by her father, Frank Deford. I read it, and re-read it over the next few years, until I was afraid it would fall apart.
Fast forward to September 2022:
On September 30th, a dream came true for me. One month before Alex would have turned 51, I stood at her grave and got to wish her a Happy early Birthday. I talked to her, telling her some things about me and my family, including my five dogs. I told her that I had thought of her as a “little sister” and had wanted to meet her for a long time. Her dad, who passed away in 2017, is to her left, so I told him how much his book had meant to me. I put a small pinwheel between the graves, and told Alex to blow and spin that thing hard, because now her lungs could! With tears pouring, I assured her that she would be one of the very first ones I’ll look for when I get to Heaven, her and Chaucer, her dog.
A little crocheted pumpkin is sitting by her headstone now, because I wanted to leave her something, and she always loved that her birthday came with Halloween decorations and fun…
*Yes, you will empty a box (or two) of Kleenex while you read this book, but it will be well worth it. After finishing, you’ll carry Alexandra Miller Deford in your heart with you forever.*
Update On Different Editions:
This is one of the few books I own multiple copies of:
A hardcover, 1st printing/1st edition from 1983, signed by the author
A paperback from 1986, with the actors from the t.v. movie pictured on the cover
A paperback, updated version from 1997, with beautiful photographs, and follow-ups about Scarlet, Christian, and Carol Deford
November 18, 2007
I cried on almost every page of this book...there is heartbreak on every page. I saw the TV-movie of Alex's story in the late 1980s as a kid and it really touched me. This year when a friend of a friend died of the same disease-cystic fibrosis-I immediately thought of Alex's story and knew it was time to read the book.
Alex was born in 1971 and died in 1980, a time when there wasn't many advances in treatment for the horrible disease. It's a heartbreaking story that I wish did not exist; however, her father writes about her with the utmost love and respect--in fact she had an amazing spirit and zest for life and he writes that he learned more about life and death from her than she probably learned from him. He writes frankly about the disease and the many struggles it put upon his little girl, family and himself. He is honest about his hatred for the evil disease, frustrations with doctors, prejudices, questions his faith at times and the difficulties of helping his wife and son grieve.
Alex was born in 1971 and died in 1980, a time when there wasn't many advances in treatment for the horrible disease. It's a heartbreaking story that I wish did not exist; however, her father writes about her with the utmost love and respect--in fact she had an amazing spirit and zest for life and he writes that he learned more about life and death from her than she probably learned from him. He writes frankly about the disease and the many struggles it put upon his little girl, family and himself. He is honest about his hatred for the evil disease, frustrations with doctors, prejudices, questions his faith at times and the difficulties of helping his wife and son grieve.
February 8, 2013
I read it as a young teen and it affected me so much and I have never forgotten Alex. As a young woman I volunteered at an auction for Cystic Fibrosis for a number of years. Why, because of this book. As a woman dealing with infertility, I remember a part of the book when Frank is in line at the grocery store buying root beer for his dying daughter and wondering to himself how everyone else's life is so normal, while he's buying root beer for his daughter who is at home dying. Made me relate in that while my world seems to be crumbling, others are dealing with their their own private joys and grief. We can never know if the person in line at the grocery store is celebrating in their hearts over good news or merely holding it together until they can get in their cars or homes to fall apart. As a parent, I can't imagine watching my child suffer and die. If a book is rated on how it stays with you after you've read it, then this one ranks up there with 5 stars. It's stayed with me for almost 30 years. You can't say that about very many books.
April 2, 2013
This is the only book I have ever read that made me cry, sobbing, out loud. It left an indelible impression on my life. There have been many advances in treatment since Alex died gasping in her father's arms, trying to the last to reassure and comfort him. CF still takes many lives too young, and there is still no cure.
November 9, 2015
I read this at ten years old. The book made me cry.
October 10, 2018
Frank DeFord wrote this book shortly after his daughter, Alex, died in 1980 from cystic fibrosis at the age of eight.
This is as one might expect, a highly emotional read. I love Frank DeFord’s writing and this was his most popular book. I had been putting it off because it is a very sad topic but I gathered up the fortitude to read the book.
After the first few introductory chapters, the writing wanders around and it is really when Alex is old enough to write and ask grown up questions about her condition that the book came together. DeFord also wrote about how hard on a marriage the universal guilt is and that is in addition to the constant full time care Alex and other CF patients require.
Moving toward the end of the book it was impossible to read the last chapters with dry eyes. When Alex knows she will die and asks so many questions about God and angels and expresses some healthy doubt about both, the adults reassure her. There is a section where the Children’s Hospital had patients write out what they would be doing when they were adults.
“What will I be when I’m 23?
I’ll be a scientist and I’ll be a enveter and go to the moon.
What will I be when I’m 43?
I’ll see other children growing up and seeing new things.
What will I do when I’m 62?
I’ll chat on the phone a long, long time like my Nana does.
If I’m alive at 95 …
They’ll have a new inventians. I’ll sit in my old rocking chair.”
The last chapter, when Alex finally succumbs to her disease at home with Mom and Dad, is as an emotional chapter as I have ever read. DeFord writes
“I’m sorry, but this is how a child dies. I can see those eyes, this moment, still. I see them constantly. But I could never describe them properly for what they meant, what they told ...”
Frank DeFord passed away in 2017.
This is as one might expect, a highly emotional read. I love Frank DeFord’s writing and this was his most popular book. I had been putting it off because it is a very sad topic but I gathered up the fortitude to read the book.
After the first few introductory chapters, the writing wanders around and it is really when Alex is old enough to write and ask grown up questions about her condition that the book came together. DeFord also wrote about how hard on a marriage the universal guilt is and that is in addition to the constant full time care Alex and other CF patients require.
Moving toward the end of the book it was impossible to read the last chapters with dry eyes. When Alex knows she will die and asks so many questions about God and angels and expresses some healthy doubt about both, the adults reassure her. There is a section where the Children’s Hospital had patients write out what they would be doing when they were adults.
“What will I be when I’m 23?
I’ll be a scientist and I’ll be a enveter and go to the moon.
What will I be when I’m 43?
I’ll see other children growing up and seeing new things.
What will I do when I’m 62?
I’ll chat on the phone a long, long time like my Nana does.
If I’m alive at 95 …
They’ll have a new inventians. I’ll sit in my old rocking chair.”
The last chapter, when Alex finally succumbs to her disease at home with Mom and Dad, is as an emotional chapter as I have ever read. DeFord writes
“I’m sorry, but this is how a child dies. I can see those eyes, this moment, still. I see them constantly. But I could never describe them properly for what they meant, what they told ...”
Frank DeFord passed away in 2017.
January 2, 2010
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.
September 18, 2015
This was an AMAZING book. I normally don't read books like these but I was given this book, along with some others, to read. I'm so glad I did because it was truly an amazing read and I loved getting to know Alex and her family. She was such a bright girl, despite her disease, and so strong from it as well. I highly recommend this book.
April 14, 2009
I don't know what to say about this book. I think everyone should read it. And at the same time no one should read it.
I cried so long and so hard last night that when I woke up this morning I couldn't see through my contacts. I had to throw them away- they couldn't even be cleaned. I felt like someone rubbed sandpaper on my eyeballs. I haven't sobbed as much as I did last night in the last decade and that is 100% true.
I've read dozens upon dozens upon dozens of true crime stories. Add to that dozens upon dozens upon dozens of victim memoirs from survivors of abuse, all sorts of abuse. But that's the thing- survivors wrote those stories. The true crime stories are often cold in a way- telling about the act of the crime itself and the murder(s) and very little about the victim(s). This was the complete opposite.
I feel like I knew Alex. I feel like I saw and can remember her mannerisms, her personality, her words, everything. I don't know, not only how her family got through this, but how her Dad wrote this book. It's so beautiful and so tragic all at the same time. I have tears in my eyes just thinking about what I read.
I'm glad it didn't take reading this book to know how lucky I am to have my daughter but it did drive it home. After I finished this book I crawled into bed with my daughter, who is roughly the same age as Alex was when they realized she was sick and not going to live, and just held her and thanked God.
The book shows you how a disease like cystic fibrosis literally tears a family apart and tried to kill everything within its victim. It also shows you how one little 8 year old girl wouldn't give it and let it win, no matter what. I thank God Alex was lucky (lucky- strange word to use in terms of her) enough to have the family that she did- she was loved like some people never, ever know.
I wish I knew how she got the strength that she had. At 8 years old. Here:
...And so I carried Alex into her treatment room. By then she had prepared herself fairly well, but as soon as she saw that stark table where she was to lie and receive her shot and her incision, she stiffened and was the little girl again. 'No, not yet! Not yet!' she cried, and she clung to me as tight as she ever had.
I remember noticing that both nurses turned away from us at that moment, because, for all they might see, day after day in a hospital, there was such an awful intimacy to Alex's gesture that they could not bear to intrude on us. I only held Alex and tried to comfort her more.
And, in time, when she had composed herself, she said, 'All right. I'm ready now.' And so she was.
So I started to lay her down where they would cut her open. And in that moment, I could not hold back any longer; one tear fell from all those welling in my eyes. And Alex saw it, saw my face as I bent to put her down. Softer, but urgently, she cried out, 'Wait!' We all thought she was only delaying the operation again, but instead, so gently, so dearly, she reached up, and with an angel's touch, swept the tear rom my face.
I will never know such sweetness again in all my life.
'Oh, my little Daddy, I'm so sorry,' is what she said. One nurse turned and bowed her head and began to sob. The other could not even stay in the room. She ran off to compose herself.
I don't know if this is something most or all people feel but I feel pain inside when I read that. Actual pain to know a baby went through this. Went through that much pain.
I know I won't ever be able to read something like this again. And I also know I won't ever forget this book.
I cried so long and so hard last night that when I woke up this morning I couldn't see through my contacts. I had to throw them away- they couldn't even be cleaned. I felt like someone rubbed sandpaper on my eyeballs. I haven't sobbed as much as I did last night in the last decade and that is 100% true.
I've read dozens upon dozens upon dozens of true crime stories. Add to that dozens upon dozens upon dozens of victim memoirs from survivors of abuse, all sorts of abuse. But that's the thing- survivors wrote those stories. The true crime stories are often cold in a way- telling about the act of the crime itself and the murder(s) and very little about the victim(s). This was the complete opposite.
I feel like I knew Alex. I feel like I saw and can remember her mannerisms, her personality, her words, everything. I don't know, not only how her family got through this, but how her Dad wrote this book. It's so beautiful and so tragic all at the same time. I have tears in my eyes just thinking about what I read.
I'm glad it didn't take reading this book to know how lucky I am to have my daughter but it did drive it home. After I finished this book I crawled into bed with my daughter, who is roughly the same age as Alex was when they realized she was sick and not going to live, and just held her and thanked God.
The book shows you how a disease like cystic fibrosis literally tears a family apart and tried to kill everything within its victim. It also shows you how one little 8 year old girl wouldn't give it and let it win, no matter what. I thank God Alex was lucky (lucky- strange word to use in terms of her) enough to have the family that she did- she was loved like some people never, ever know.
I wish I knew how she got the strength that she had. At 8 years old. Here:
...And so I carried Alex into her treatment room. By then she had prepared herself fairly well, but as soon as she saw that stark table where she was to lie and receive her shot and her incision, she stiffened and was the little girl again. 'No, not yet! Not yet!' she cried, and she clung to me as tight as she ever had.
I remember noticing that both nurses turned away from us at that moment, because, for all they might see, day after day in a hospital, there was such an awful intimacy to Alex's gesture that they could not bear to intrude on us. I only held Alex and tried to comfort her more.
And, in time, when she had composed herself, she said, 'All right. I'm ready now.' And so she was.
So I started to lay her down where they would cut her open. And in that moment, I could not hold back any longer; one tear fell from all those welling in my eyes. And Alex saw it, saw my face as I bent to put her down. Softer, but urgently, she cried out, 'Wait!' We all thought she was only delaying the operation again, but instead, so gently, so dearly, she reached up, and with an angel's touch, swept the tear rom my face.
I will never know such sweetness again in all my life.
'Oh, my little Daddy, I'm so sorry,' is what she said. One nurse turned and bowed her head and began to sob. The other could not even stay in the room. She ran off to compose herself.
I don't know if this is something most or all people feel but I feel pain inside when I read that. Actual pain to know a baby went through this. Went through that much pain.
I know I won't ever be able to read something like this again. And I also know I won't ever forget this book.
February 28, 2009
The only reason I wouldn't give this five stars is because I don't know if I ever want to read it again...it's too sad!
This is a true story about an 8-year-old who dies of cystic fibrosis. What makes the story so inspiring is how amazing little Alex was. She was brave and accepting as well as spunky and happy. It made me hope my daughter will be as unique as Alex was!
I also appreciated the writing. It's written by her father and he is frank and honest about the reality of how hard it is to live with a dying child. It made me wonder how I would cope. Made it very easy to read and made him very relateable.
This is a true story about an 8-year-old who dies of cystic fibrosis. What makes the story so inspiring is how amazing little Alex was. She was brave and accepting as well as spunky and happy. It made me hope my daughter will be as unique as Alex was!
I also appreciated the writing. It's written by her father and he is frank and honest about the reality of how hard it is to live with a dying child. It made me wonder how I would cope. Made it very easy to read and made him very relateable.
August 17, 2009
I wish Frank Deford could know that I will show kindness to other people in memory of Alex. I wish I could thank him for telling us about her, because without this book we would not have known how wonderful she was. One person can change how we live. Alex was one of those people.
August 29, 2012
I'm actually surprised to see that so many people read this book as a pre-teen... at least I know that I'm not the only masochistic weirdo! haha!
Anyway, I remember stumbling across this book as it was delivered in the mailbox (for free) in one of homes that my father was having renovated and he brought it home for me to read. I was a voracious reader and would read anything that I could get my hands on...
but this book really stood out to me because it really touched my heart. I have it on my bookshelf and every time I see it, while I am searching for something to read, I am reminded of Alex and her story.
The story is tragic and sad but so well written... especially for a man who is not an author, but a father... and especially on a topic like this... that undoubtedly caused much pain and heartache.
I can honestly say that this book has really had some sort of effect on my life (I got very interested and involved with "65 roses"), so I definitely think it is a must-read for anyone.
You might cry though the whole book like I did... but it just might be worth it..
Anyway, I remember stumbling across this book as it was delivered in the mailbox (for free) in one of homes that my father was having renovated and he brought it home for me to read. I was a voracious reader and would read anything that I could get my hands on...
but this book really stood out to me because it really touched my heart. I have it on my bookshelf and every time I see it, while I am searching for something to read, I am reminded of Alex and her story.
The story is tragic and sad but so well written... especially for a man who is not an author, but a father... and especially on a topic like this... that undoubtedly caused much pain and heartache.
I can honestly say that this book has really had some sort of effect on my life (I got very interested and involved with "65 roses"), so I definitely think it is a must-read for anyone.
You might cry though the whole book like I did... but it just might be worth it..
January 5, 2014
I have never read a book like this one, from a parents point of view caring for a terminally ill child. While I thought I could only be crying through out this entire book, it was not like that at all. Yes the end of the book is very sad, have tissues handy but so much of the book was uplifting & inspiring .... how the author & his wife & child Alex lived 8 years of her short life. Having spent sleepless nights with a child with breathing difficulties I was able to identify with Frank & his wife. I read the first half of the book as I listened to my own son cough & try to get to sleep with a cold.....thinking about how each day of their lives must have been. For me this book helped me go on with the daily challenges that I face with each of my children ......no matter what happens we just need to love them and support them as best we can. I would recommend this book to anybody & everybody.
December 30, 2011
This one made me cry. I think there is something to be said for writing that moves us so emotionally that it can bring us to tears. Off the top of my head I can't recall anything else that I've read that has had this reaction. Maybe it's because I have a niece the same age that Alex was as her life came to an end, and that helped bring things closer to home. I found that Alex reminded me of this niece and I got choked up as I read what she said to her parents and others. It would be hard enough to lose my niece, and I cannot imagine the difficulties of losing a child.
The only concerns (though probably too strong a word) that I had about the book were that the first part moved rather slowly (I was planning to just give 3 stars until I had to fight against my lacrimal glands) and that it only gives the picture of cystic fibrosis back in the late 70's. Things have progressed a lot in CF management and treatment, not to the point of a cure, but where median life expectancy is twice what it was--about 38 years old instead of 18.
Those things being said, I think the book does very well what it is intended to do: give insight into a family that has a child with a terminal chronic illness. Deford doesn't try to sugarcoat the feelings of anger or sadness that he had. The famed sports commentator isn't ashamed that he cried multiple times throughout the journey. It certainly made me think about how I would handle a similar situation, and makes me grateful for my faith. I appreciated that Deford was willing to discuss his (and Alex's) faith in the book, and couldn't help but wonder if those elements would have made it into a book written in more recent times.
Terribly sad at times, and uplifting and causing of admiration in others. It even ends on a happy note that explains the few lines of italicized text at the beginning: .
Rating: PG, for some intense emotional parts, some mild language.
Parts that stood out to me:
Ch.9: "We are all made different. We make ourselves special. Alex was born different, but only as she grew did she become special, on her own hook. If you start off saying a child is special because she suffers from a handicap, that is a disservice, because you are robbing her of what she might become on her own."
Ch.21: Never forget to listen to the patient. They often know their body better than we do. Alex knew that her lung collapsed, and treatment was delayed because a resident thought he knew better.
Ch.22: Alex is being taken in for another chest tube placement. She's clinging to her dad before the procedure, then finally says, 'All right. I'm ready now.' "So I started to lay her down where they would cut her open. And in that moment, I could not hold back any longer; one tear fell from all those welling in my eyes. And Alex saw it, saw my face as I bent to put her down. Softer, but urgently, she cried out, 'Wait!' We all thought she was only delaying the operation again, but instead, so gently, so dearly, she reached up, and with an angel's touch, swept the tear from my face.... 'Oh, my little Daddy, I'm so sorry,' is what she said. One nurse turned and bowed her head and began to sob. The other could not even stay in the room. She ran off to compose herself. It was some time before we could get going again."
Ch.25: Alex's last hours, some very touching conversations between her and her family. Her death. Pretty heavy, but sweet.
The only concerns (though probably too strong a word) that I had about the book were that the first part moved rather slowly (I was planning to just give 3 stars until I had to fight against my lacrimal glands) and that it only gives the picture of cystic fibrosis back in the late 70's. Things have progressed a lot in CF management and treatment, not to the point of a cure, but where median life expectancy is twice what it was--about 38 years old instead of 18.
Those things being said, I think the book does very well what it is intended to do: give insight into a family that has a child with a terminal chronic illness. Deford doesn't try to sugarcoat the feelings of anger or sadness that he had. The famed sports commentator isn't ashamed that he cried multiple times throughout the journey. It certainly made me think about how I would handle a similar situation, and makes me grateful for my faith. I appreciated that Deford was willing to discuss his (and Alex's) faith in the book, and couldn't help but wonder if those elements would have made it into a book written in more recent times.
Terribly sad at times, and uplifting and causing of admiration in others. It even ends on a happy note that explains the few lines of italicized text at the beginning: .
Rating: PG, for some intense emotional parts, some mild language.
Parts that stood out to me:
Ch.9: "We are all made different. We make ourselves special. Alex was born different, but only as she grew did she become special, on her own hook. If you start off saying a child is special because she suffers from a handicap, that is a disservice, because you are robbing her of what she might become on her own."
Ch.21: Never forget to listen to the patient. They often know their body better than we do. Alex knew that her lung collapsed, and treatment was delayed because a resident thought he knew better.
Ch.22: Alex is being taken in for another chest tube placement. She's clinging to her dad before the procedure, then finally says, 'All right. I'm ready now.' "So I started to lay her down where they would cut her open. And in that moment, I could not hold back any longer; one tear fell from all those welling in my eyes. And Alex saw it, saw my face as I bent to put her down. Softer, but urgently, she cried out, 'Wait!' We all thought she was only delaying the operation again, but instead, so gently, so dearly, she reached up, and with an angel's touch, swept the tear from my face.... 'Oh, my little Daddy, I'm so sorry,' is what she said. One nurse turned and bowed her head and began to sob. The other could not even stay in the room. She ran off to compose herself. It was some time before we could get going again."
Ch.25: Alex's last hours, some very touching conversations between her and her family. Her death. Pretty heavy, but sweet.
March 5, 2016
I read this book when it first came out, and it has stayed with me for 30+ years. When my infant daughter was ill, a doctor wondered if she wasn't suffering from CF. My heart plummeted, and I must have had a stricken look on my face, because the doctor quickly assured me that CF wasn't an immediate death sentence. I remembered all the hardships of Alex and her family, and her heartbreaking death at the age of eight. The doctor informed me that CF patients could expect to live until 20. Thankfully, today, the survival rate is almost 30 years.
Little Alex's story has probably done more to raise awareness of cystic fibrosis than any other single person. I'm so sorry she wasn't able to benefit from the research and new drugs.
Edit of 03/05/2016: I'm happy to say that the outlook for those suffering with CF has continued to improve: "Overall, the improvement in survival witnessed among those with CF in absolute terms, in those countries studied, is considerable and supports the assertion that a median survival in excess of 50 years for those born in 2000 should be expected." - http://www.ncbi.nlm.nih.gov/pmc/artic...
Little Alex's story has probably done more to raise awareness of cystic fibrosis than any other single person. I'm so sorry she wasn't able to benefit from the research and new drugs.
Edit of 03/05/2016: I'm happy to say that the outlook for those suffering with CF has continued to improve: "Overall, the improvement in survival witnessed among those with CF in absolute terms, in those countries studied, is considerable and supports the assertion that a median survival in excess of 50 years for those born in 2000 should be expected." - http://www.ncbi.nlm.nih.gov/pmc/artic...
August 9, 2010
Everyone knows cystic fibrosis is a horrible disease. However, reading the account of a father watching his child die - I had not realized just how truly brutal it could be to all involved, how this disease could take over the lives of all it touched.
This is an unvarnished, unflattering account of a little girl who knew at a very young age that she was going to die badly, and how she came to terms with it. I thought at first the writing style was too simplistic, until I saw how much more powerful it was.
The one quote that really stuck with me was this, near the end: "I really only know this one thing for sure: there are no lessons to learn from having your child die. There is no value in it whatsoever."
This is an unvarnished, unflattering account of a little girl who knew at a very young age that she was going to die badly, and how she came to terms with it. I thought at first the writing style was too simplistic, until I saw how much more powerful it was.
The one quote that really stuck with me was this, near the end: "I really only know this one thing for sure: there are no lessons to learn from having your child die. There is no value in it whatsoever."
January 22, 2017
It's hard to say how many times I read this book when I was growing up, or how many times I watched the subsequent TV movie. What I do know is that there are moments that are burned into my memory, as if I had lived through them myself. Upon re-reading this now as an adult, it's easy to see why Alex's story made such an impression. It's tragic and heartbreaking, but it's also told skillfully by her loving - and talented - father Frank Deford. In my eyes, "Alex: The Life of a Child" is a modern classic.
POPSUGAR Reading Challenge 2017: A book you loved as a child
POPSUGAR Reading Challenge 2017: A book you loved as a child
October 27, 2018
This isn't the tear jerker I was expecting. I'm not sure if that's good or bad. Frank Deford wrote very honestly about his family's experience with his daughter's disease and while he expressed their anguish it somehow didn't translate into anything more than a clear-eyed chronicle of Alex's life. It's a good story and well told, and the short chapters move quickly. I have no complaints but the story just wasn't transformative for me.
I'm somewhat surprised that the everyday life of Frank Deford resonated more with me. I remember his work with Sports Illustrated and Real Sports and always liked him. In this book he describes his life in Connecticut, personally and professionally, and it struck me that he was just another regular guy in the community, watching the same dumb sitcoms we all see, going to the market like everyone else. That isn't very enlightening and it probably wasn't his intention to paint himself as a regular guy, albeit famous, living a regular life but that's what I thought of most when I read the book and that's why I didn't rate it higher.
I'm somewhat surprised that the everyday life of Frank Deford resonated more with me. I remember his work with Sports Illustrated and Real Sports and always liked him. In this book he describes his life in Connecticut, personally and professionally, and it struck me that he was just another regular guy in the community, watching the same dumb sitcoms we all see, going to the market like everyone else. That isn't very enlightening and it probably wasn't his intention to paint himself as a regular guy, albeit famous, living a regular life but that's what I thought of most when I read the book and that's why I didn't rate it higher.
April 21, 2017
If you read this be prepared to really cry your eyes out when Alex dies. It's a tough read. Learned about cystic fibrosis which I knew next to nothing about. Like it's genetic and takes two carriers to pass it on. There's a one in four chance their baby will have it, a one in four chance he'll be free and clear and two in four chances he'll be a carrier. Sad book.
October 10, 2012
I think this is a good book for fifth graders and up.I think this is a good book for children who think there life is bad, but you know what, people have it much worse than you. So when you think your life is bad look at kids who have cystic fibrosis or cancer or mental illnesses. I think "Alex The Life of a Child" is a good title for the book, because it is about a child and the eight years of her short life. Her dad is telling the story of her eight years of her life. Alex, the main character, has cyctic fibrosis. Every day she has to go through her therapy. This consists of diffrent positions and someone punding on her chest. She goes to the hospital many times in the book. Alex has a brother a mother and a dad. She calls her brother chrish but his real name is christopher. She just could never pronounce his name right. Alex to me was as wonderful as God his self. She just brightend my day. Reading Alex changed my whole outlook on life. I won't tell what happens to Alex at the end of the book, but what I can say is it is heartbreaking ending. FOR ALL OF YOU WHO LOVE SAD STORY'S, THIS IS THE BOOK FOR YOU.
July 2, 2010
This book is for when you need a good cry. The sportscaster author once had two children, a career a house a dog a lovely wife and everything. But the second child and only little girl was never well, not for a day was she ever healthy. She had cystic fibrosis. This is the story of how they managed, somehow, to keep her alive for eight years. And this is the story of an amazing, wise, mature, very loving person, Alexandra DeFord, who managed in eight years to somehow live a powerful life of touching and teaching others, the great lessons that she somehow knew. She is clearly an older soul than her father - of which he could not be more aware. There is a mystical element to the book, and to her life, which seems to puzzle the author more than anything, but he serves it up factually, what happened in her life from beginning to end. Ultimately it is a book of wondering, at the gifts given and taken away, by spirits we do not know as well as we sometimes say we do. And wondering at the magnificent spirits that sometimes come and inhabit the bodies of the ones we do know and really love.
March 8, 2016
This is one of the first books I can remember checking out myself and reading, and I don't know what would have possessed a 12 year old to read a book like this, but it definitely changed me and stayed with me all these years. I even reread it years later. It details the short life of DeFord's daughter Alex who had Cystic Fibrosis. Very moving, and everybody I recommended it to loved it as well. I'll never forget how DeFord realizes that she was born just after the 1970 census, and died just before the next one. Even my mother remembers this book to me: how she made the mistake of reading it on the bus from work, and everybody stared at her because she was crying. Alex had a lot of spirit and spunk and love for her family, and despite all her pain she lived a wonderful life. I wish I had a dad like Frank DeFord. Unforgettable.
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October 6, 2011I'm not going to rate this book with stars.
The first thing people need to know about this book is that it is written about a child with CF born in 1971. None of its contents are relevant in any way to the life of a person with CF now, medically speaking.
That being said, this book and this movie has paid its dues in fundraising and support for Cystic Fibrosis. It is just so emotionally jarring.
My grandma gave me this book when I was in third grade. The reason she did that is because the movie had been on TV the week before, and my parents didn't tell me. The next day apparently all of the kids that did see it suddenly had all these ideas about my life. And of course, I was blindsided.
The first thing people need to know about this book is that it is written about a child with CF born in 1971. None of its contents are relevant in any way to the life of a person with CF now, medically speaking.
That being said, this book and this movie has paid its dues in fundraising and support for Cystic Fibrosis. It is just so emotionally jarring.
My grandma gave me this book when I was in third grade. The reason she did that is because the movie had been on TV the week before, and my parents didn't tell me. The next day apparently all of the kids that did see it suddenly had all these ideas about my life. And of course, I was blindsided.
October 11, 2012
A beautiful book about a beautiful child named Alex.Alex couragously fought cf for 8 years.I have an original copy of the book,as well as the updated edition,and a copy of the movie,starring Gennie James as Alex.Alex dreamed of the day a cure for cf would be found.Today much work has been done in cf research.But much more needs to be done wich is why involvment in cf fundraising is so important!I would recommend this beautiful book to anyone wanting to read about a couragous child who never let her cf get her down.Alex was a sweet and loving little girl.I like to think that some where in heaven both Alex and my cousin Madison who lost her battle with cf at the age of 11,are playing together,laughing not having to pause to catch a breath or cough,and playing with their dogs together!!!
March 5, 2016
The terribly heartbreaking story of young Alex Deford, who suffered and died from cystic fibrosis. Written by her father, Alex's story is one of a crippling disease and tutus. Of painful therapy that hurt her parents just as much to impose and deliver her therapy as it was for her to take it. Of week-long hospital stays. Of root beer Alex never drank. Of dancing in the hospital halls, all the while hooked to an IV pole. And of Alex's incredible personality and strength.
"I've often thought about that, Mother. Just what it would be like not to have a disease. I wouldn't even ask for forever. Just for a day I'd like to wake up one morning, and not have any pain or be sick or anything. Just once to be free."
June 10, 2013
I just finished reading this book. It's terribly sad but very well written - it feels like someone is just talking to you instead of reading a book. I don't know anyone with cystic fibrosis and I don't even have kids but I found this book so easy to jump into. I couldn't tell you how many times I teared up. I think it's important to try and learn about those who are different from us in any way and try to see waht their life is like. I find myself reading a lot of book about diseases, mental illnesses, etc. This book does a great job of showing you what it's like to have a child with cystic fibrosis and what daily life is (or at least was back in the 1970's) for individuals with this disease.
September 11, 2016
I read this book when I was about 12 years old and it has stuck with me through the years. As soon as I read it I knew if I ever had a little girl that her name would be Alex. My Alex is 21 years old this year. :) This is one of those books that will break your heart and lift you up at the same time. There were times growing up when I was down or sad but couldn't just cry or let out my emotions so I would go to this book and it would work like a charm. At the same time she was such a courageous little girl that your heart swells with the love of her. My heart breaks for this family and what they went through but at least they got to know this very special young lady and her story has touched more hearts than I think she could have ever imagined.
July 1, 2008
I read this book to see how the author would handle the difficult subject of his daughter’s cystic fibrosis, because I’ve been working on a memoir of my own about my disabled son.
I didn’t find many parallels with my family’s story, but was completely floored by Deford’s account of Alex -- her simple charm and lack of self-pity -- and all the good she inspired in the people around her. This is by far the saddest book I’ve ever read. But it’s sad in a constructive way. At the appropriate time I want my daughter to read it, because it may help her appreciate her blessings in growing up healthy. Alex will live forever in these pages.
I didn’t find many parallels with my family’s story, but was completely floored by Deford’s account of Alex -- her simple charm and lack of self-pity -- and all the good she inspired in the people around her. This is by far the saddest book I’ve ever read. But it’s sad in a constructive way. At the appropriate time I want my daughter to read it, because it may help her appreciate her blessings in growing up healthy. Alex will live forever in these pages.
November 26, 2012
Frank Deford is one of my writing heroes. His book, "Alex: The Life of a Child," is the most moving memoir I have ever read, probably because my daughter Erin and I feel like Frank’s relationship with his daughter Alex mirrored our own. Alex was eight years old when she died of cystic fibrosis on January 19, 1980, seven months after Erin was born. This book, the story of Alex’s life, is so eloquent and intimate that neither Erin nor I can read it without sobbing. But that’s a good thing. Reading about Alex’s short but heroic life inspires us to be better, to appreciate every drop of life we are given, and to express our love and appreciation of others.
July 10, 2013
One of my favorite books of all time. I first read it after seeing a TV mini-series that was done based on the book in 1985 or so. I've read it dozens of times and I still cry. Mr. Deford (apparently a sports author-I'm not interested in sports and have never read any of his other work), captures his daughter's illness from so many angles: his own, each family member, friends of Alex, teachers, medical professionals, and even the illness itself. So many poignant moments and just regular living in eight short years. Sigh. I think I'll pull it out again right now. I feel tears welling up.
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