Hayley Okines - Young at Heart: The Likes and Life of a Teenager with Progeria

Young at Heart

The likes and life of a teenager with progeria

Hayley Okines

With Alison Stokes

The amazing and awkward life of Britains oldest teenager

Hayley Okines is just like any other seventeen-year-old: she loves clothes, shopping, TV and boy bands and hates getting up in the morning.

But she has the rare genetic condition progeria, which means she ages eight times faster than normal, giving her the body of a 126-year-old woman. Her positive attitude and infectious smile has charmed millions of people, through a series of Extraordinary People TV documentaries.

Now in Young at Heart Hayley continues her unusual life story, which began with first memoir Old Before My Time. She reflects on the pains and perks of growing up with progeria; from the heartbreak of being told she will never walk again to the delight of passing all her exams and starting college. She reveals the success of pioneering American drug trials, the sadness of losing younger friends to the disease and considers mood swings, marriage, music and what its like to be famous.

As she approaches her seventeenth birthday, four years beyond the average life expectancy for someone with progeria, Hayley looks forward to an independent and healthy future and tries hard not to think of what lies ahead.

Published by Accent Press Ltd 2014

ISBN 9781783752706

Copyright Hayley Okines and Alison Stokes 2014

The rights of Hayley Okines and Alison Stokes to be identified as the authors of this work have been asserted by the authors in accordance with the Copyright, Designs and Patents Act 1988.

All rights reserved. No part of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, electrostatic, magnetic tape, mechanical, photocopying, recording or otherwise, without the written permission of the publishers: Accent Press Ltd, Ty Cynon House, Navigation Park, Abercynon, CF45 4SN

Cover Image Jason Fry Photography

Foreword

When I first met Hayley Okines at a Sunshine Foundation Progeria Reunion in America she was two years old. In those early years, we had no real understanding of progeria, but knew that the only way to forge ahead towards treatments and cure was together, as a team.

Hayley was one of the first participants in the research that initiated that forward momentum.She participated in the Progeria Research Foundation programs during those early years.In 2005, when she came to the US National Institutes of Health clinical study, she was a shining star courageous, cheerful and full of hope.Now I see her when she participates in the Boston Childrens Hospital treatment trials and she has grown into an intelligent, beautiful, amazing young woman.

In 2007, Hayley and twenty-seven other children were the first to participate in the first-ever progeria drug trial. She is a pioneer and one of the reasons that we now have the first treatment for progeria. It has taken the tremendous courage and determination of Hayley, her family and others like them to bring us to this point of progress toward a cure.

Leslie B. Gordon, MD, PhD

Medical Director, The Progeria Research Foundation

Hayleys Dedication

I would like to say a massive thank you to my Mum and Dad for always being there for me.

Mum, you are the worlds best chauffeur and potato peeler and I would be lost without the Bank of Mum. And Dad, you are a great photographer and have captured so many of our happy family times. I love you both so much.

Mrs G thanks for putting up with me throughout high school and never telling me to shut up.

Courtney for being the biggest loser and making me laugh even at times when I didnt think I wanted to.

Dr Whincup for being the best doctor ever. Whenever I see you it never feels like a horrible hospital appointment, you are more like a friend. You continue to look after me and explain the medical stuff in ways that are easy to understand and not scary. Thank you for your continuous care.

Hayley xxx

Kerrys Dedication

Thanks to my Mum and Dad for your neverending support and love.

My sister Janie for being my rock: youve been there through my darkest times and the fun times too. You are an enormous help to me and Hayley, both physically and emotionally.

My friend Angela for being there to give me a kick up the bum when I need it.

To the medical teams and scientists in the UK and USA a massive thank you for keeping us up to date with the trials and new treatments. Your relentless research is helping us to understand and fight progeria.

Tracey Gilbert, aka Mrs G, who took on the role of being a mum to Hayley throughout her high-school years. It made me happy knowing that Hayley had someone to talk to as a friend and confidante. Every day you made sure she was all right and never once broke Hayleys trust.

And last, but no way least, Hayley. You may be a mardy-arsed teenager, but you are the reason I get out of bed in the morning. You give me the strength and focus to keep going through the sad times and the good. Your sarcasm and wit make me laugh every day. You are one special daughter.

Kerry

Introduction

People always ask me what its like being a teenager with progeria. And I never know what to say because theres nothing to it. I dont think of myself as being a teenager with Hutchinson-Gilford progeria; Im just a teenager.And this book is all about my life as a teenager.But before you start, here are some things you should know

About me:

Just because Im small, it doesnt mean I am a baby. I am seventeen not seven and would prefer it if people talked to me like an adult.

People who have seen me on TV say, youre so happy.How can you stay positive all the time? But Im really not a positive person; I can be negative like most teenagers.

I hate it when people say I have the body of a 136-year-old because I dont feel different from any other teenager.

I am in a wheelchair because I can no longer walk on my own. But I am not disabled; I just cant walk on my own.

I have dreams, ambitions and crushes.

Progeria doesnt define my life, it just makes it more awkward and interesting.

Some things you should know about Hutchinson-Gilford progeria:

Its a really rare syndrome that makes you age eight times faster than normal and really small.

There are ninety-four cases in the world, so far, and most people with it die from strokes and heart attacks.

Its caused by a bad gene.

Its not catching, its not passed on in families, its just bad luck.

When I first had it, doctors said I probably wouldnt live to see my thirteenth birthday. Ive just turned seventeen.

Chapter 1

Why Am I Such A Rubbish Teenager?

My thoughts on drugs, dates and getting drunk

I want to let you in on a secret. I really am a sad excuse for a teenager. I may be seventeen but sometimes I feel like I really am eight times older. I dont do any of the things that girls of my age are expected to do like drink, smoke, swear or hang around in parks or on street corners. I hate alcohol: wine is horrible and beer smells like old socks. Id much prefer a cup of tea or a mug of hot chocolate. I never intend to get drunk in my life because drunken people irritate me so much.Smoking is disgusting. My mum smokes and I hate the smell. I dont even swear, well at least not out loud, I just mutter swear words in my head.

I only have one close friend now and her name is Courtney.We first met at primary school when we were four years old and have stayed friends ever since. She has stuck by me through all the horrible times and looked out for me at school. I have thousands of followers on Twitter and friends on Facebook but they are mostly people who have seen me in the TV documentaries, which have been shown all over the world. I have had film cameras following me and filming my life since I was four years old, but I still find it weird when strangers come up to me and say HaventI seen you on TV? Usually I nod and say, Probably.The last documentary I made was in 2010. I stopped because I didnt like being the centre of attention, but those old programmes are still being shown on different channels like Channel 5 in Britain and the National Geographic Channel in America. I dont like watching them because I look like a baby.