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Old Before My Time: Hayley Okines' Life with Progeria
The extraordinary life of Britain's 100-year-old teenager
Hayley Okines is like no other 13-year-old schoolgirl.
Born with the rare genetic condition progeria, she ages eight times faster than the average person. In medical terms her body is like that of a 100-year-old woman. Yet she faces her condition with immense courage and a refreshing lack of self-pity.
In Old Before My Time, Hayley and her mum Kerry reflect on her unusual life. Share Hayley's excitement as she travels the world meeting her pop heroes Kylie, Girls Aloud and Justin Bieber and her sadness as she loses her best friend to the disease at the age of 11.
Now as she passes the age of 13 ― the average life expectancy for a child with progeria ― Hayley talks frankly about her hopes for the future and her pioneering drug trials in America which could unlock the secrets of ageing for everyone...
Hayley Okines is like no other 13-year-old schoolgirl.
Born with the rare genetic condition progeria, she ages eight times faster than the average person. In medical terms her body is like that of a 100-year-old woman. Yet she faces her condition with immense courage and a refreshing lack of self-pity.
In Old Before My Time, Hayley and her mum Kerry reflect on her unusual life. Share Hayley's excitement as she travels the world meeting her pop heroes Kylie, Girls Aloud and Justin Bieber and her sadness as she loses her best friend to the disease at the age of 11.
Now as she passes the age of 13 ― the average life expectancy for a child with progeria ― Hayley talks frankly about her hopes for the future and her pioneering drug trials in America which could unlock the secrets of ageing for everyone...
224 pages, Paperback
First published October 27, 2011
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1464 people want to read
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Displaying 1 - 30 of 159 reviews
June 11, 2013
It speaks volumes about this family that my initial reaction was that Hayley's story is a bit... boring. But that's actually a good thing. If a young girl can live a life battling an illness (and its attendant issues; HBP, osteoporosis, etc.) and her life isn't 100% medical drama all the time THAT'S FANTASTIC.
Hayley and her mother alternate writing chapters and while I liked the change in points of view, a lot of the information was redundant. I think this might have worked better as an interview type of format, so that mother and daughter aren't giving the exact same details. But it is nice to see both sides -- what the adults are working on/worried about and how Hayley perceives it/reacts to it. There are even some pretty deep details about the parents' marriage and the stress of raising children; maybe too many for a book that was intended only to focus on Hayley. Although there is little mention of the siblings and how they handle the situation. Hayley has gotten a lot of media attention (by design, her parents wanted to raise enough money to take her to Disney World) and is admittedly spoiled rotten -- how does this dynamic affect the siblings?
I only wish that this family had a better online presence. For as public as they are, their website hasn't been updated since 2009 and it would be nice to know how everyone is doing.
Hayley and her mother alternate writing chapters and while I liked the change in points of view, a lot of the information was redundant. I think this might have worked better as an interview type of format, so that mother and daughter aren't giving the exact same details. But it is nice to see both sides -- what the adults are working on/worried about and how Hayley perceives it/reacts to it. There are even some pretty deep details about the parents' marriage and the stress of raising children; maybe too many for a book that was intended only to focus on Hayley. Although there is little mention of the siblings and how they handle the situation. Hayley has gotten a lot of media attention (by design, her parents wanted to raise enough money to take her to Disney World) and is admittedly spoiled rotten -- how does this dynamic affect the siblings?
I only wish that this family had a better online presence. For as public as they are, their website hasn't been updated since 2009 and it would be nice to know how everyone is doing.
December 25, 2012
Thank you so much for sharing your story with the rest of the world.
This book brought many emotions to me, sometimes made me laugh, sometimes my eyes got wet but in general it was a cute and nice experience.
Hayley, you are not only special because you got progeria, other children have the disease too but you have made the difference in the life of many people who have watched specials about you and by other people that have the bless of reading your book. You have touched our hearts.
I follow you on twitter and facebook. I thank you for sharing with us such many things to happen in your life.
I only can say, thanks God for your life but over all, thanks for creating such special and lovely girl.
This book brought many emotions to me, sometimes made me laugh, sometimes my eyes got wet but in general it was a cute and nice experience.
Hayley, you are not only special because you got progeria, other children have the disease too but you have made the difference in the life of many people who have watched specials about you and by other people that have the bless of reading your book. You have touched our hearts.
I follow you on twitter and facebook. I thank you for sharing with us such many things to happen in your life.
I only can say, thanks God for your life but over all, thanks for creating such special and lovely girl.
March 28, 2018
What an angel... God bless her soul in heaven and her entire family.. I was so inspired by her courage, sense of humor and overall positive attitude.
February 15, 2012
Very well written, humbling book. Hayley is a wonderfully positive thinking teenager with a deadly disease. But she refuses to concentrate on that fact that she is dying, and instead LIVES every minute with dreams of the future, humor and love! One of the saddest stories I ever read, and yet it leaves me smiling through my tears... And hoping... That's what Hayley teaches me... Hope is the Begin of every change to the better!
January 8, 2017
Hayley Okines' story is a touching and heart-warming memoir about the life of a girl born with Progeria, a rare condition causing premature aging. This account is written from both her own perspective and that of her Mother. I rarely award 5 stars and this time it is mostly for the content and not the writing skills. A memorable little gem of a book about an extraordinary, brave little girl who's bubbly, happy and kind disposition shines through all the way.
April 27, 2013
Quick read; read it in one day. Very interesting. The writing wasn't the greatest; I noticed several typos and some sentences were just very odd. I also had trouble understanding some of the British terms used. MOT? But I enjoyed reading Hayley's story and am glad she is doing well.
August 13, 2014
Very well written one amazing teenager who has been through so much yet smiles through it all. Thank you for sharing your story so well.
July 11, 2017
I really enjoyed reading this book. I believe I saw Hayley on TV sometime in the last several years, so I knew a little bit about her and Progeria, but not very much. This book is written very well, as Hayley and her mother each have their own chapters. You can see how Hayley had such a sweet and positive outlook on life and her disease, her innocence also shines through. It is heart-wrenching to hear her mother's side, about living not knowing what was happening to Hayley, to all the family went through to give her the best life and treatment possible.
May 23, 2019
Good read. Makes you laugh and cry and realise the value of life. From one little girl who stayed positive until the very end.
February 21, 2015
When Kerry Okines became pregnant in 1997, she and her husband, Mark, looked forward to the typical experiences of raising a child. Within a few months of their new daughter, Hayley’s, birth, however, they realized that she was not developing normally. She was not gaining weight, only an ounce or two between health visitor appointments. Kerry noticed small lumps on Hayley’s abdomen which the doctor dismissed as “nothing to worry about.” By the time Hayley was six months old, the Okines were convinced there was a problem. The doctor’s began getting concerned around Hayley’s first birthday.
Following several months of testing, the doctors concluded that Hayley had Hutchinson-Gilford Progeria Syndrom, a disorder that causes children to age eight times faster than normal. At eighteen months, she could hold conversations with adults. She knew the names of colours and could count to 10. Her mother wrote, “She definitely seemed much wiser and more inquisitive than other 20-month-old toddlers.”
But physically, she was subject to the same diseases as elderly people–arthritis, joint stiffness, fragile bones, aging skin, dental problems. “Children with progeria die of heart disease or strokes at an average age of thirteen years.”
Kerry wrote that there were only 40 other known cases of progeria in the world and only one other case in the United Kingdom beside Hayley. There was no known cure and the situation was having a negative effect on Kerry and Mark’s relationship. They were not married at the time but married later on when Hayley and her younger brother and sister requested they do so. At one point she contemplated killing Hayley and committing suicide.
She was finally able to find other families who had faced the diagnosis and were able to provide support. She also learned of the Sunshine Progeria Reunion where all the children in the world with progeria and their families were able to meet in the United States every year to share experiences and be with other children just like them. The Progeria Research Foundation provided information about the disease and, perhaps more importantly, encouraged her to make every minute count instead of worrying about what might or might not happen.
One of the problems faced by the children with progeria was having people stare at them. Kerry realized that people were curious and suggested that instead of staring, ask questions to learn about the condition.
Kerry and Mark decided to go public with their story to help educated the public. Because of that, the media has been a major part of their lives. That provided with opportunities that most other children never have–meeting celebrities (like Prince Charles and Justin Bieber), going on vacations, getting on television, getting gifts, etc.
Some of the chapters are written by Kerry and some by Hayley. Hayley wrote that she didn’t remember a lot of the things that happened to her when she was very young, such as some trips, meeting Prince Charles, and winning awards. She notes that she had lots of friends in school but “didn’t like it if everyone is like, ‘Hello, Hayley.’ It’s hard work being a star.”
In 2002, scientists were able to discover the DNA mutation that caused progeria and began looking for a drug to slow it down if not cure it. Hayley was among the children who first tested the drug. She hoped it would help her grow hair and grow taller. She later took part in a second drug test, also successfully.
One thing that bothered me about the story was Kerry and Mark seemed to feel entitled to having people donate money to finance their vacations. I know they had medical expenses but England does provide health coverage and their trips to the US were important for psychological and health reasons. I know they appreciated the help they received. But I felt they felt they deserved more because of Hayley’s progeria.
I liked comparing Kerry’s view of what was happening with Hayley’s perspective of the same incidents. The book has a lot of pictures and is very positive about living with a child who has a terminal illness. It provides a lot of information about the symptoms of the disease and how people cope with it. On the whole, it is very positive.
So far as I have been able to find on-line since finishing the book, Hayley is still alive and functioning.
I got this e-book from a free Amazon download.
Following several months of testing, the doctors concluded that Hayley had Hutchinson-Gilford Progeria Syndrom, a disorder that causes children to age eight times faster than normal. At eighteen months, she could hold conversations with adults. She knew the names of colours and could count to 10. Her mother wrote, “She definitely seemed much wiser and more inquisitive than other 20-month-old toddlers.”
But physically, she was subject to the same diseases as elderly people–arthritis, joint stiffness, fragile bones, aging skin, dental problems. “Children with progeria die of heart disease or strokes at an average age of thirteen years.”
Kerry wrote that there were only 40 other known cases of progeria in the world and only one other case in the United Kingdom beside Hayley. There was no known cure and the situation was having a negative effect on Kerry and Mark’s relationship. They were not married at the time but married later on when Hayley and her younger brother and sister requested they do so. At one point she contemplated killing Hayley and committing suicide.
She was finally able to find other families who had faced the diagnosis and were able to provide support. She also learned of the Sunshine Progeria Reunion where all the children in the world with progeria and their families were able to meet in the United States every year to share experiences and be with other children just like them. The Progeria Research Foundation provided information about the disease and, perhaps more importantly, encouraged her to make every minute count instead of worrying about what might or might not happen.
One of the problems faced by the children with progeria was having people stare at them. Kerry realized that people were curious and suggested that instead of staring, ask questions to learn about the condition.
Kerry and Mark decided to go public with their story to help educated the public. Because of that, the media has been a major part of their lives. That provided with opportunities that most other children never have–meeting celebrities (like Prince Charles and Justin Bieber), going on vacations, getting on television, getting gifts, etc.
Some of the chapters are written by Kerry and some by Hayley. Hayley wrote that she didn’t remember a lot of the things that happened to her when she was very young, such as some trips, meeting Prince Charles, and winning awards. She notes that she had lots of friends in school but “didn’t like it if everyone is like, ‘Hello, Hayley.’ It’s hard work being a star.”
In 2002, scientists were able to discover the DNA mutation that caused progeria and began looking for a drug to slow it down if not cure it. Hayley was among the children who first tested the drug. She hoped it would help her grow hair and grow taller. She later took part in a second drug test, also successfully.
One thing that bothered me about the story was Kerry and Mark seemed to feel entitled to having people donate money to finance their vacations. I know they had medical expenses but England does provide health coverage and their trips to the US were important for psychological and health reasons. I know they appreciated the help they received. But I felt they felt they deserved more because of Hayley’s progeria.
I liked comparing Kerry’s view of what was happening with Hayley’s perspective of the same incidents. The book has a lot of pictures and is very positive about living with a child who has a terminal illness. It provides a lot of information about the symptoms of the disease and how people cope with it. On the whole, it is very positive.
So far as I have been able to find on-line since finishing the book, Hayley is still alive and functioning.
I got this e-book from a free Amazon download.
July 29, 2014
Perhaps you’ve heard of the amazing Hayley Okines, or maybe you’ve seen her on TV. Hayley was born with an incredibly rare condition called Progeria, which causes her to age eight times faster than the average person. From the time she was a baby, she looked like an elderly person, and had the physical symptoms to accompany that, including things like arthritis. She is also very small and frail. Because these children have the bodies of very old people, they rarely make it into their teenage years. This book is written by both Hayley and her mother, in alternating chapters, and tells Hayley’s story from the time she was born until present day (really 2011, when it was written).
First and foremost… girl has SPUNK and she NEVER lets this disorder get her down. She was only 13 years old at the time this book was written, and had such a positive attitude already. Because of her Progeria, she has had some amazing experiences in her life like meeting Kylie Minogue, Steve Irwin, and Justin Bieber. She even says that if she were given the choice, she would still live her life with this condition because of the opportunities it has afforded her. Yes, she endures a lot of pain and discomfort, and yes, her life isn’t always normal, but her outlook on life is truly incredible.
While Hayley talks a lot about the positive experiences that have come along with having Progeria, Kerry, her mother, discusses a lot of the difficulties, like seeing fellow Progeria children pass away, or trying to decide whether Hayley should partake in various drug trials to try and prolong her life. With these two voices narrating, we are able to see two different sides of the issue, which is very eye-opening. I admire the entire family because they are always willing to do anything they can to improve Hayley’s life, while also allowing her to live as normal a life as possible.
Today, Hayley is about 17 years old. She has lived longer than most people with Progeria have, and I continue to root for her and her family. She truly is remarkable and admirable. I loved getting to know more about her story through reading this book.
One thing I will say is that the writing is not the best. I know some of the issue for me may have been the British slang, but I also felt it could have been edited better. I still really enjoyed learning more about Hayley though, and I don’t think this issue will bother everyone, but I just wanted to point it out and explain why my rating wasn’t higher.
Anyway, if you enjoy those TV documentaries about extraordinary people and/or medical issues, like I do, this book may be right up your alley. In fact, Hayley has been filmed for multiple shows herself, and I will continue following her story and progress as best I can.
First and foremost… girl has SPUNK and she NEVER lets this disorder get her down. She was only 13 years old at the time this book was written, and had such a positive attitude already. Because of her Progeria, she has had some amazing experiences in her life like meeting Kylie Minogue, Steve Irwin, and Justin Bieber. She even says that if she were given the choice, she would still live her life with this condition because of the opportunities it has afforded her. Yes, she endures a lot of pain and discomfort, and yes, her life isn’t always normal, but her outlook on life is truly incredible.
While Hayley talks a lot about the positive experiences that have come along with having Progeria, Kerry, her mother, discusses a lot of the difficulties, like seeing fellow Progeria children pass away, or trying to decide whether Hayley should partake in various drug trials to try and prolong her life. With these two voices narrating, we are able to see two different sides of the issue, which is very eye-opening. I admire the entire family because they are always willing to do anything they can to improve Hayley’s life, while also allowing her to live as normal a life as possible.
Today, Hayley is about 17 years old. She has lived longer than most people with Progeria have, and I continue to root for her and her family. She truly is remarkable and admirable. I loved getting to know more about her story through reading this book.
One thing I will say is that the writing is not the best. I know some of the issue for me may have been the British slang, but I also felt it could have been edited better. I still really enjoyed learning more about Hayley though, and I don’t think this issue will bother everyone, but I just wanted to point it out and explain why my rating wasn’t higher.
Anyway, if you enjoy those TV documentaries about extraordinary people and/or medical issues, like I do, this book may be right up your alley. In fact, Hayley has been filmed for multiple shows herself, and I will continue following her story and progress as best I can.
July 29, 2015
After finishing this book I went online to see what the latest news on Haley is. Sadly, she passed away April of this year. With this information, I'm torn between writing an actual review and just leaving well enough alone. Seeing as her mother isn't on goodreads, I feel compelled to give my honest opinion. And Haley's mother or anyone else with a real-life connection to Haley or her family, if you ever come across this review, STOP READING NOW.
It's really hard to write an honest review of a book of this sort without reviewing the story that is told within. , and, to an extent, the people in it. I was NOT going to write my opinion until I came across Haley's statement on page 176 that she and her mother join in pointing out people who are poorly dressed and laughing at them. With that in mind - although I feel bad about the sad situation(s) of the family, Haley's mother comes off not too flatteringly in this book. Understatement of the year.
First of all, if your lifelong dream is to have children, it's incredibly foolish to be dating (and living with) a man who has 2 children from a previous relationship and who doesn't want any more. Not to mention her dating her best-friends' ex-husband. Her wedding photos brought only one word to mind, and unfortunately, that word is "trashy". Her parenting skills definitely leave something to be desired, telling her daughter that she is special, ALL THE TIME, because she has Progeria, as if nd not having Progeria makes her other children un-special. Haley is only special because of her disease? What a disservice to the girl, and to her other children. Her cluelessness in parenting was a bit of a theme throughout (Haley can go to a funeral, but she mustn't be too sad, says her mother, who cries throughout. And then she comments extensively on Haley's hiding her true feelings about things, as if there is no connection between the two, just to give one example. ) as well as her enmeshment with her kids and disrespect for her partner, and just...unfortunate choices throughout. While I recognize that she undoubtedly did not have the same educational/relationship guidance that I have been blessed with, and therefore its really unfair of me to judge, this book was hard to read as it was pretty much one big head-smack, in between all the tales of fear of the future and celebrity name-dropping.
The authors are also not professional writers, and it shows. A more involved editor would have helped this book's readability mightily.
It's really hard to write an honest review of a book of this sort without reviewing the story that is told within. , and, to an extent, the people in it. I was NOT going to write my opinion until I came across Haley's statement on page 176 that she and her mother join in pointing out people who are poorly dressed and laughing at them. With that in mind - although I feel bad about the sad situation(s) of the family, Haley's mother comes off not too flatteringly in this book. Understatement of the year.
First of all, if your lifelong dream is to have children, it's incredibly foolish to be dating (and living with) a man who has 2 children from a previous relationship and who doesn't want any more. Not to mention her dating her best-friends' ex-husband. Her wedding photos brought only one word to mind, and unfortunately, that word is "trashy". Her parenting skills definitely leave something to be desired, telling her daughter that she is special, ALL THE TIME, because she has Progeria, as if nd not having Progeria makes her other children un-special. Haley is only special because of her disease? What a disservice to the girl, and to her other children. Her cluelessness in parenting was a bit of a theme throughout (Haley can go to a funeral, but she mustn't be too sad, says her mother, who cries throughout. And then she comments extensively on Haley's hiding her true feelings about things, as if there is no connection between the two, just to give one example. ) as well as her enmeshment with her kids and disrespect for her partner, and just...unfortunate choices throughout. While I recognize that she undoubtedly did not have the same educational/relationship guidance that I have been blessed with, and therefore its really unfair of me to judge, this book was hard to read as it was pretty much one big head-smack, in between all the tales of fear of the future and celebrity name-dropping.
The authors are also not professional writers, and it shows. A more involved editor would have helped this book's readability mightily.
December 16, 2015
This made for some sad reading knowing young Hayley lost her battle earlier this year. Spookily, it would've been her eighteenth birthday the day before I started reading which was heartbreaking as she so wanted to beat her progeria and reach that milestone. She certainly did better than many of the poor kids afflicted with this awful disease and even though she lost her own personal battle she ensured, along with her parents, that maybe other kids would benefit from the medical trials she participated in.
I'd followed her story throughout all her TV shows and was upset to see her parents split up-you had got to know them all so well.
Loved her cover photo on my version..I smiled at her differing coloured nails. She certainly had an individual look. And speaking of photos I have a lovely photo I saved from her Instagram pictures she took of a rose...one I treasure.
It was horribly sad too to read of her hero-worship of Steve Irwin knowing she outlived him. As Kerry mentioned, he ended up dying after tangling with one of the gentlest creatures which was awful. I cried too reading about her precious Pops sobbing by the fishpond by her side.
It was so tragic she saw many of her pals she met up with annually also pass away with the disease.
She was a smashing kid and it's such a tragedy she's no longer with us.
I'd followed her story throughout all her TV shows and was upset to see her parents split up-you had got to know them all so well.
Loved her cover photo on my version..I smiled at her differing coloured nails. She certainly had an individual look. And speaking of photos I have a lovely photo I saved from her Instagram pictures she took of a rose...one I treasure.
It was horribly sad too to read of her hero-worship of Steve Irwin knowing she outlived him. As Kerry mentioned, he ended up dying after tangling with one of the gentlest creatures which was awful. I cried too reading about her precious Pops sobbing by the fishpond by her side.
It was so tragic she saw many of her pals she met up with annually also pass away with the disease.
She was a smashing kid and it's such a tragedy she's no longer with us.
September 15, 2012
I really wanted to like this book more than I did. I have followed Hayley and her story for several years now, and I guess I was hoping to learn more about the trials that she is on. It was interesting to hear both Hayley's point of view as well as her mother's. Her mother, however...I just don't know. I didn't get a good vibe about her. She is always complaining about the cards she's dealt, how she and her husband frequently fight, the lack of money that they have, yet they go on theses exotic trips. I understand wanting Hayley to see the world, as no one knows how long she will live, but I am not sure they go about things the right way. Regardless, it was an informative book, and I will always be rooting for Hayley.
July 19, 2012
I was lucky enough to receive this book through the First Reads program here at Goodreads. Like many people I didn't know much about Progeria. I had heard of it, of course, but I didn't know any details. Old Before My Time: Hayley Okines' Life with Progeria delves into subject matter that has rarely been touched, offering readers two views of what it's like to have your life touched by the rare disease: Hayley's mother Kerry, and Hayley herself. What touched me the most was Hayley's determination and zest for life. Despite the hand she's been dealt, she has the most brilliant smile I've ever seen. At once heartbreaking, touching, and funny, everyone should read this book. Now. Hayley is one brave girl and we can all learn something from her.
December 26, 2012
I saw Haleys story on a documentary on TV recently, and when I saw her book was available, I thought it would be a good little read. She is very sweet, and the book is half written by her, and half by her mum about her life living with progeria.
You have to admire the girl, who even though small and with many health issues still attended normal primary and high school when she could. Because of her television programmes, so many people throughout the world have learned about this devastating illness and we hope there is less pointing and staring, and more understanding for patients such as Hayley.
You have to admire the girl, who even though small and with many health issues still attended normal primary and high school when she could. Because of her television programmes, so many people throughout the world have learned about this devastating illness and we hope there is less pointing and staring, and more understanding for patients such as Hayley.
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August 23, 2012i'm going to start book reviews again. i stopped cause i was so busy. but i do need to write reviews again...even if it's not for every book.
i loved this book. i had seen documentaries on Hayley before, but reading her story was a wonderful thing too. i love memoirs and i speed through this one. Hayley had Progeria where she ages 8 times faster making her really 100 at only the age of 13. She is strong with all the tests she goes through, she doesn't let anything get in her way. even if you're not a fan of memoirs i suggest you read this book. :)
i loved this book. i had seen documentaries on Hayley before, but reading her story was a wonderful thing too. i love memoirs and i speed through this one. Hayley had Progeria where she ages 8 times faster making her really 100 at only the age of 13. She is strong with all the tests she goes through, she doesn't let anything get in her way. even if you're not a fan of memoirs i suggest you read this book. :)
March 18, 2012
Loved seeing this from both Hayley's and Kerry's Points of View. I've been following Hayley's story on the on channel 5. Hayley really is an inspiration to us all. I hope that soon there will be a cure for Progria, along with everything else. Only Hayley could get away with asking Price Charles for his autograph. I told my mum this morning, and smiled. The only reaction I've found when someone mentions Hayley's name. Truly amazing.
June 8, 2013
I've watched a few of the documentaries that include Hayley and definitely think her story is better absorbed that way. This book was written mostly by her mother and is quite choppy in all aspects. It doesn't go in chronological order and it just doesn't seem to flow very well.
Her story is a very good one - just not so much when put in book form.
Her story is a very good one - just not so much when put in book form.
December 29, 2013
This was a disappointment that I eventually decided not to finish. I had hoped to read a story about a brave young girl who lives with a horrible disease, but instead I found the majority of the beginning focuses on the Mom. While I realize, obviously, there is no story without Mom's input, I didn't pick up the book to read about Mom, but Hayley.
June 8, 2013
Heartbreaking at times, yet very inspiring.
April 6, 2015
Brave Girl
I had never heard of this disease before reading this book. It's amazing how strong Hayley and her family are. Wonderful book.
I had never heard of this disease before reading this book. It's amazing how strong Hayley and her family are. Wonderful book.
October 5, 2019
This book is about Hayley Okines, a British girl who was born with progeria, the disease that causes children to age eight years for every one for non-progeria people. It was certainly interesting to learn more about the disease, just as her parents did when there was little information available. And, with the advent of the internet and social media, awareness has increased throughout the world about this horrible disease. But at the same time, I found the book to be disappointing because it all just seemed like a big advertisement. I found the turbulent relationship between Kerry and Mark, Hayley's dad, to be unfortunate and unpleasant to watch. Although I admired their dedication to the cause, it wasn't fun to see their marriage deteriorate as time went on. The chapters alternated between Kerry and Hayley, so it was interesting to see their different interpretations of the same story, Hayley's being that of a child, of course. NOTE: I looked it up and saw that Hayley died at the age of 17 in 2015.
June 10, 2018
I remember the first time I saw and/or heard anything about Progeria - I had been watching a talk show and for all I know the person on that show could have been Hayley...I remember it had a profound effect on me - I was heartbroken then (as I am now) that children had to endure something such as this. In reading this book I was so encouraged to think that Hayley might actually outlive the limits doctor's stated. Toward the end of this book I was hopeful to think that others (along with Hayley) could actually beat this "thing" - this horrible, thing that limits a child's future. I looked her up on the internet only to learn that she had indeed passed away at the age of 17. That is a bittersweet thing to read - as one must be happy that she did live beyond 13 years of age and yet so sad that someone so brave, so grounded, so positive about her life and her future has left us at such a young age. Well worth reading but would advise to have at least one or two Kleenex handy.
February 22, 2020
This book revolves around Hayley Okines, who was diagnosed with progeria, which makes these children look like they are old men and women. I got this book back in January 2013. so shame on me that it took me over 7 years to get to this one.One would think this might be sad and depressing, but instead it is rather interesting, who gets involved in drug trials for progeria to hopefully extend her lige. Children who suffer from progeria usually have a life expectancy of 13. I won't tell you how long she lives or if these drugs help increase or decrease her lie expectancy. You'll have to find out yourself.
I originally was going to give this 3 and then I thought after a couple days 3.5 stats rounded up to 4 stars on Goodreads, but then I remembered the book was poorly edited with missing words, etc. and decided to keep it at 3.5, but round it down to 3 stars.
I originally was going to give this 3 and then I thought after a couple days 3.5 stats rounded up to 4 stars on Goodreads, but then I remembered the book was poorly edited with missing words, etc. and decided to keep it at 3.5, but round it down to 3 stars.
January 4, 2018
As someone disabled since birth, I loved and fully identified with Hayley's chapters. Kerry's were longer and too medically/scientifically detailed for my liking. I would have liked to know more about her feelings about having a disabled child- she does share these but in less detail than she shares her medical knowledge of progeria.
February 2, 2023
This book gives both the mother, Kerry Oakines, and the daughter, Hayley Okienes, views on the disease of progeria.
We know how it's going to end, but the book takes you to her 13th birthday.
Like most children who have to go through these illnesses, they are stronger than their parents and caregivers at times. This is shown with Haley and her parents.
We know how it's going to end, but the book takes you to her 13th birthday.
Like most children who have to go through these illnesses, they are stronger than their parents and caregivers at times. This is shown with Haley and her parents.
October 27, 2017
Lovely but sad
Fantastic book which gives very good insight into this darling angels world. Highly recommend it to anyone who is looking for a book that makes you laugh, cry and warms your heart
Fantastic book which gives very good insight into this darling angels world. Highly recommend it to anyone who is looking for a book that makes you laugh, cry and warms your heart
April 4, 2018
book review
I loved this book very factual and loved the fact t showed Hayleys point of view and her mum's point of view on Hayleys battle with progeria
I loved this book very factual and loved the fact t showed Hayleys point of view and her mum's point of view on Hayleys battle with progeria
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