Living Every Day To It’s Fullest

Hayley the AngelEarly last year, I saw a true life medical show about a young British girl who has Progeria. Progeria is the “aging” disease, in which young children grow old before their time, suffering the ailments that the elderly suffer…. heart disease, arthritis, poor eyesight, brittle bones, the list goes on. At the time this book was written, there were only 89 recorded cases of the disease in the world.  I was so impressed with this beautiful girl that I had tears in my eyes. She told all about her daily life as a soon to be teenager, defying the odds with a disease that has the life expectancy of 12 or less. I had missed the start of the show, but what I saw was moving.

By chance, a month ago, I saw that Hayley and her mother Kerry had written a book about Hayley’s life  titled, Old Before My Time: Hayley Okines’ Life With Progeria. It was offered free for my Kindle and I couldn’t wait to download it. I have to say it is one of the best books I have read in a long time. The book starts with Hayley’s mother writing about her birth, the first suspicions that something isn’t quite right, diagnosis, and living with this so-called “death sentence”. Hayley’s portion of the book talks about her meeting many celebrities, struggling with school, friends, and health issues. She maintains a positive attitude, I think in part to the loving family that surrounds her. She also makes some great friends with people such as the late “Crocodile Hunter” Steve Irwin and British singer Kylie Minogue.

There is some sadness in the book of course, when the family attends annual Progeria get-togethers for families and their kids , they talk about how some years some families are not there as their children died. Especially heartbreaking is the story of one boy who dies from a heart attack during one conference. There is also Hayley’s struggles with things such as bed sores due to fragile skin, tooth problems, heart problems and for her, being bald.

This is a book that should not be missed. This girl has one heck of a spirit. As she say,  “Sometimes people ask me if I could have three wishes, would I wish I didn’t have P. And I say no. My life with Progeria is full of happiness and good memories. Deep inside I am no different from anyone. We are all human.” She puts many of us to shame. In December 2012 , Hayley celebrated her 15th birthday. I wish her many years in the best health she can be. She is an inspiration. You can learn more about her and Progeria at:

http://hayleyspage.com/

http://hayleyokines.com/

-Christine

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