Okines Hayley - Old Before My Time: Hayley Okines Life With Progeria

OLD BEFORE MY TIME

HAYLEY and KERRY OKINES
with ALISON STOKES

Published by Accent Press Ltd 2011

ISBN 9781908192554

Copyright Hayley and Kerry Okines 2011

Hayley and Kerry Okines have asserted their right to be identified as the authors of this work in accordance with the Copyright, Designs and Patents Act 1988

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying or otherwise without the prior permission of the publisher: Accent Press Ltd, The Old School, Upper High Street, Bedlinog, Mid-Glamorgan CF46 6RY

Printed and bound in the UK

Cover design by Madamadari

Hayleys Dedication

I WOULD LIKE TO say a huge thank you to my Mum and Dad for always being there for me. You have put up with travelling, hospital visits and with me and my attitude. I love you both so much.

Thank you for taking me to the most amazing places all over the world. Thank you so much, love from your daughter Hayley.

A massive massive thank you to my special Pops and Nanna, family and friends.

A special thanks to Erin for being my best friend for the past 10 years. You have seen me laugh, cry, and have been there to lift my spirits when things get me down.

Thank you to James and Nicki from Rabbit Productions for taking their time to capture parts of my life. I know I was probably a pain sometimes but it was so worth it.

I love and miss my dearest friend, who unfortunately passed away 5 years ago. Life is not the same without you here. I wish I could just have 5 more minutes with you to tell you just how much you mean to me.

Hayley xxx

Kerrys Dedication

THANKS TO MY MUM, dad and family for being my rock, giving me support and your unconditional love through the good times and bad.

Thank you to my friends, ones that have come and gone and ones that have stayed by my side.

Thanks to Rabbit productions Nicki and James for helping us with our quest to raise awareness and for making Hayley a star.

Thanks to all the doctors and scientist who are working extremely hard in finding a cure for Progeria.

A big thanks to Dr Graham Whincup, not only for being Hayleys favourite doctor but also becoming a family friend.

Thanks to Dr Sheila Mohammed for your help in the very early days of Hayleys diagnosis.

Dr Lorna Bray for your care and support after Hayleys diagnosis.

Mr Hinves for the special and delicate care you have given and continue to give Hayley throughout her dislocations.

A big thank you to Hayley for being my daughter, my friend, someone to laugh with and cry with. Thank you for all the special memories you have given me. Love you lots and always.

Kerry

Introduction

MY NAME IS HAYLEY Okines and people tell me I am special.

I have a disease called Hutchinson-Gilford Progeria that makes me age eight times faster than other people.

The easiest way to explain it is its like my body is a hundred years old when I am actually thirteen, but I dont like it when people call me old because I dont feel like I am a hundred years old.

I am smaller than other kids my age. I have a brother, Louis, who is nine and a sister, Ruby, who is six. Although I am the big sister in the family they are actually bigger than me.

Mum says I am one in eight million because my condition is so rare. I have had lots of TV programmes made about me because I am so different, and people I dont know come up to me and say, Hi, have I seen you on the telly? and I have to smile and be polite.

Living with progeria is hard because people treat you like a baby. The worst is having all the treatment and needles. I have been going to America for special treatment that we hope will cure my progeria. I know the new drugs will not make me look like other kids but they will help me to grow hair and live longer.

Sometimes people ask me if I could have three wishes would I wish I didnt have progeria. And I say no. It would be good to not have it, and it would be fun to go out and not get stared at and not have loads of people ask questions. I would rather have progeria than not have it, though. Dont ask me why, but I wouldnt change it.

When Mum and Dad first found out I had progeria the doctors said I would only live to thirteen.

On December 3 2011, I will be fourteen.

I am not worried about dying. They said the Titanic wouldnt sink but it did, so that proves experts can be wrong and I want to prove the doctors wrong.

My life with progeria is full of happiness and good memories. If I didnt have progeria I would not have done most of the cool things I have done or met most of the cool people I have met.

Deep inside I am no different from anyone. We are all human.

Six months old, June 1998

Me at one year old, 1998

With my half-sisters Charlotte, right, and Stacey, left, 2000

Me, Nanna and Pops, 2007

Me and Mum on the way to our first ever Progeria Reunion in America, 2000

Me and Mum at an American steakhouse during the Progeria Reunion, 2003

Having fun painting at a Progeria Reunion, 2001

Riding my bike by the beach at Bexhill-on-Sea, 2002

Dressing up as Princess Hayley at the Progeria Reunion, 2003

My first day at Sidley Primary School, September 2001

Pretending to be an angel watching over my Mum at the Progeria Reunion, 2003

Me and Mum, Christmas 2001