I don't feel 100: progeria sufferer Hayley

Hayley is well-known in Bexhill as the courageous youngster battling progeria, a rare genetic condition she was born with, and is fast becoming a national and international celebrity as her popularity at the book signing showed.

Written by Hayley and her mum Kerry, the book describes the incredible journey Hayley and her family have travelled whilst battling on throughout all that progeria has thrown at them in the past 13 years.

Hayley’s condition causes her to age eight times faster than the average person, meaning at the age of 13, in medical terms, her body is like that of a 100-year-old. She is one of around just 80 people known to have progeria worldwide. Hayley says in the introduction “I don’t like it when people call me old because I don’t feel like I am a hundred years old.”.

But the first thing that is striking about the book is the cover. How could anyone not be drawn in by that wonderful smile?

Make no mistake though, behind that warm, open and inviting smile, perfectly expressing Hayley’s character, is a teenager fighting for her life and a force to be reckoned with.

This book is no self-pity tale, it’s an incredible story of a fighter who refuses to be beaten and is beautifully written.

Capturing not only Hayley’s strength, courage and determination but also that of her incredibly supportive family it’s impossible to read this story and not be awestruck.

Along with a series of photographs from the age of six months to the present day, the book documents the highs and lows of Hayley’s life.

At the age of four she became the face of the Channel 5 series Extraordinary People which was seen by around 1.7 million viewers. She’s met many celebrities in her full life, including meeting her pop idol Justin Bieber and HRH Prince Charles, from whom she managed to charm a rare autograph.

She’s travelled the world and was the first child in the UK to take part in pioneering drug trials in the USA which involved painful medical treatments but gave Hayley hope for the future. Hayley said: “My life is full of happiness and good memories as well as needles and treatments. My book is about all the happy times in my life and some sad ones too.

“The best thing about having progeria is that I get to go to really cool places and meet cool people.”

Hayley’s book signing at Waterstones, Eastbourne, turned out to be the most popular signing the store has seen in two years. Senior book seller Karen South said: “People were queuing for 20 minutes before Hayley was due to start signing. People who have seen her on TV wanted to meet her face to face. Thanks to Hayley it was one of the biggest book signings we’ve had. She’s absolutely fabulous, a lovely, lovely character.”

The average life expectancy for a child with progeria is 13, Hayley continues with her quest to prove the experts wrong and turns 14 tomorrow (December 3).

• Old Before My Time: My Life with Progeria by Hayley & Kerry Okines is published by Accent Press and costs £9.99.