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Old Before My Time: Hayley Okines' Life with Progeria Paperback – March 1, 2012
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'Hayley's an extraordinary girl'
'Hayley possesses one of the strongest life-forces we have ever encountered.' Richard & Judy
About the Author
Hayley has been the face of Channel 5's critically acclaimed Extraordinary People series since she was just 4 years old. Her films have aired to audiences of 1.7 million. Hayley is a captivating personality and is currently filming her fifth documentary Hayley's Teenage Dream which will be broadcast on C5 in September. For the first time she will also narrate the documentary.
Top customer reviews
Her mother tells us of the initial fight to identify Hayley's disease, the many trips to various hospitals, the misdiagnoses, the expense of travelling to the US for Hayley's care and the toll it took on her family unit. Hayley has an acceptance of her own plight as well as her family that far exceeds individuals twice her age. She does not waver in her belief that they will find a cure, and she will make a contribution to society.
I know you will Hayley; may God bless you and your family, and thank you for writing this wonderful book that gives us all further insight into this mysterious aging disease.
Of all the anecdotes related by Hayley and her mother, the ones which stand out the most were the ones where they had to deal with the FDA. I was particularly irritated with the FDA's attitude with regard to potential treatments. While they dragged their feet trying to decide whether or not to approve human trials, children were getting sicker are dying! I've never understood this mentality. When you're dealing with an illness that has a 100% mortality rate, there's no reason to wait. They're going to die without treatment, and if there's a possibility that a treatment will prolong life or lessen symptoms, then give them the treatment!
My only complaint about the book is that it was obvious that neither Hayley nor her mother have any background in writing. Even with the assistance of a ghost writer, it still felt as if it might have been a first, rough draft in need of serious editing and polishing.
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.