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
Hayley’s 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
Kerry’s 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 Hayley’s favourite doctor but also becoming a family friend.
Thanks to Dr Sheila Mohammed for your help in the very early days of Hayley’s diagnosis.
Dr Lorna Bray for your care and support after Hayley’s 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 it’s like my body is a hundred years old when I am actually thirteen, but I don’t like it when people call me old because I don’t 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 don’t 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 didn’t 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. Don’t ask me why, but I wouldn’t 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 wouldn’t 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 didn’t 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
Holding my 10-day-old brother Louis, 2002
Team mascot for Chelsea Football Club, 2004
Dad's dream fulfilled at Chelsea Football Club
Me and TV star Ross Kemp at the Children of Courage Awards in London, 2003
Me and TV presenter Lorraine Kelly at the Children of Courage Awards in London, 2003
My new best friend Kylie Minogue, 2004
Me and Nicola Roberts of Girls Aloud, 2008
Backstage with Kimberley Walsh of Girls Aloud at their concert, 2008
Presenting Simon Cowell with my Voices for Tomorrow CD, 2006
Asking Prince Charles for an autograph when I won the Children of Courage Awards in 2002
Meeting my hero the Crocodile Hunter Steve Irwin, 2004
I was so lucky to meet superstar Justin Bieber for my 13th birthday, December 2010
Filming one of my documentaries on the beach at Bexhill, 2004
Me and Louis with our new baby sister Ruby, 2005
Me and Mum on holiday in Egypt, 2006
Me and Dad with a snake on holiday in Egypt, 2006
Me and Dad wrestle alligators on holiday in Florida, 2003
Mum and Dad's wedding day, July 2006
A bridesmaid at Mum and Dad's wedding, July 2006
Having tests before the first progeria drug trial in America, 2007
I hate having needles for blood tests, 2008
Having my eyes tested at the NIH trials, 2005
Hooked up on the treadmill, 2005
More tests, this time monitoring how many calories I burn when I lie down, 2007
Our family with Dr Leslie Gordon and Scott Berns of the Progeria Research Foundation and their son Sam in Boston, 2008
Making history as the first child in Europe to try the FTI drug, 2007
Me and Michiel presented with awards for completing the triple drug trial, pictured with Amber and Louis, 2009
Me and Michiel in my hot tub, 2007
My first day at Bexhill High School, 2009
My 13th birthday, 2010
Posing with m
y friends at a sleep over, 2010
With my ‘little brother and sister’ Ruby and Louis, August 2011
Watching my book in production, 2011 photo courtesy Channel 5/Rabbit Productions
Preparing for the photoshoot for my book cover, July 2011 photo courtesy Channel 5/Rabbit Productions
Me and my best friend Erin, 2011
Chapter 1
Kerry
We’re Having a Baby
TWO LINES APPEARED IN the window. ‘What the hell am I going to tell Mark? He’s going to hit the roof,’ I said to my friend and confidante, Jane. It was the fourth pregnancy test stick I had peed on in three days and the results were the same. I was pregnant.
I could feel the butterflies starting to flutter in my stomach just thinking of the conversation that lay ahead when my boyfriend came home from work. Thirteen years older than me, Mark was already a single dad to Stacey, seven, and Charlotte, twelve, from his previous marriage, so his nappy-changing years were behind him. We had only been dating for a couple of months and I thought I had been safe on the contraceptive pill. Despite the initial shock I was thrilled at the thought of being a first-time mum. It was all I had ever wanted. My first Christmas memory when I was a kid was the year my dad had made two blue, wooden cots for me and my sister Janie. I must have only been three, Janie was two, and we played with those cots for years, pretending to be mums to our rag dolls. We would carry them everywhere, feeding them and changing nappies.
Now I was twenty-four and my life would soon be complete.
I could never understand those career women who would sacrifice everything for their work. I would happily have given up my job in the school kitchen just to have a baby to love and care for. I thought there was nothing like the love between a mother and child, it was unconditional and everlasting and something I wanted. After years of dating boys who were afraid of commitment, I wanted someone to love me as much as I loved him or her; and a baby would give me that love I craved.
‘Maybe I should hang a pair of baby booties on the front door knocker. Perhaps that will give him a hint,’ I joked with Jane, thinking of ways I could soften the blow.
When Mark arrived home that evening after his 12-hour shift at the parcel delivery company, I was sitting on the sofa alone watching Emmerdale. The four positive pregnancy tests were laid out on the cushion next to me.
As he took off his coat and hung it on the back of the chair he noticed the plastic sticks on the sofa.
‘We’re having a baby,’ I chirped before he had the chance to say anything.
‘Are you sure?’ From the look on his face anyone would have thought I had slapped him with a month-old kipper.
‘Of course I am. I’ve got an appointment with the doctor on Friday. But that will only confirm what I already know. We’re going to be parents.’ As I had expected, the reaction was not good. The silent treatment lasted for days as Mark sulked over the news of the addition to his family.
Looking back, I can understand Mark’s less than ecstatic reaction. It was all happening too quickly.
Perhaps we should have been more careful. I was probably too young to be part of a ready-made family with another baby on the way. But I didn’t consider that at the time. I had grown up in a large family. In my immediate family I was the eldest of three. My sister was only a year younger than me. When I was just three months old my mum had one hell of a shock when she took me for a check up at the baby clinic and discovered she was expecting Janie. My half-brother, Steven, was six years younger. My mother was one of seven and my dad was one of 11, so Christmases and special occasions were always big events.
Mark, on the other hand, had come from a small family. His mother, Brigitte, and her sister fled from East Germany as the partition of Berlin was beginning in 1951. After settling in Hastings, she met Mark’s dad who was driving the trams. He had one younger sister and no nieces and nephews, so he was used to the quiet life.
Mark also had a good reason to be fearful of another baby. He and his ex-wife Jane, who was also my best friend, had lost their second daughter, Lucy, to cot death when she was just eight weeks old. The trauma of trying to give his tiny baby the kiss of life had haunted him for years and quite understandably he was worried that it would happen all over again. All of this was a perfectly acceptable reaction to the baby news, but, being a typical bloke, he didn’t share his feelings with me. He just sulked.
The reality hit when I came back from my first ultrasound scan with a blurry black and white photo of our healthy baby girl and a due date of November 30 1997. Mark started coming round to the idea of the new addition and for the next few months we enjoyed our final period of freedom knowing our carefree days would soon be over.
We both loved dance music and clubbing. That’s how we met. I was working as a shelf-stacker at Somerfield supermarket with Mark’s ex-wife near my parents’ home in Cranbrook, Kent. One afternoon as she was filling up her freezer section with fish fingers and I was rotating the full-fat milk in my fridge area, she said, ‘Me and Mark and a few friends are going to the Eighties Night at Saturdays nightclub in Hastings this weekend. Fancy joining us?’ Why not? I thought, I’m footloose and fancy free.
Duran Duran’s ‘Rio’ was playing as we hit the club. ‘C’mon. Let’s dance,’ said Jane, dragging me on to the crowded disco floor. If I’m totally honest, eighties pop music wasn’t really my bag, I was more of a trance and house music fan. I was having fun, though. As Duran Duran segued into Kylie Minogue we were really warming up to the music. Then I noticed Jane gesticulating to a bloke with a greying goatee beard who was standing by the bar.
‘Who are you chasing?’ I shouted to be heard above the disco beat.
‘That’s my ex, Mark.’ I had heard Jane talk of her ex-husband and her two daughters and I had always been impressed by how they managed to stay good friends after their divorce. What I didn’t realise was that she was playing match-maker.
‘Can I get you a drink?’ Mark asked once we had finally fought our way from the dance floor to the bar.
‘I’ll have a vodka with lime and lemonade – no ice,’ I replied, not realising that this was his attempt at a chat-up line.
Drinks in hand, we talked about work and music. Mark and I had more in common than I imagined. We shared the same taste in music and the same dry sense of humour. But there was zero chemistry. I just thought he seemed like a nice bloke. As the weeks passed, I went out more with Jane, and Mark would always be there too. Call me stupid but I didn’t think anything of it – a bunch of girls and one bloke who always seemed to make a beeline to talk to me. I didn’t even realise that he had made a special effort and combed his hair, which was dark brown, cropped short and peppered with a hint of grey. Mark was just another friend. That was until Christmas when I invited Mark to a party.
‘You can stay at my place if you don’t want to get a taxi home,’ he offered. So I did. Two weeks later I had virtually moved in. And the rest, as they say, is history.
It turned out Mark was a bit of mix master. He had a set of DJ decks at his house and he would make me mixtapes, which were as good as anything I’d heard played at the clubs. Mark also introduced me to the rave scene. In those days – the late 90s – illegal raves were still popular and the Kent countryside across the border from our home in Sussex was a prime location. It was always a game of cat and mouse, the ravers versus the police and authorities. Under the darkness of the night we would drop Mark’s daughters off at the babysitters and drive out into the countryside, following an anonymous tip-off and a convoy of headlights into the countryside until we arrived at a field where there was a party in full swing. We would dance non-stop, my favourite tune at the time was ‘Take Me Away’, by a band called 4 Strings, a really uplifting dance anthem that always got me waving my glow sticks in the air. When the sun rose over the hedges we would head home, relieved that the police and council officials had not raided the party. Once I had a taste for the great outdoors, Mark introduced me to
festivals like Global Gathering and Cream Fields, three days of non-stop dancing. I was in my element.
After a hedonistic summer of festivals and fun, Mark and I started preparing for our new arrival.
We were living in a two-bedroom council house on an estate in the sleepy seaside town of Bexhill-on-Sea on the East Sussex coast. Space was at a premium. We had no room for a nursery and money was tight. I had changed jobs and was working as a chambermaid at a local hotel while Mark was working up to 12-hour shifts at the local Amtrak parcel delivery company just to make ends meet. He always said to me, ‘Don’t worry about money,’ which I later realised meant we never had any money so we had no worries. With two children to care for and a third on the way there was never any spare cash for luxuries at the end of the month. We begged and borrowed to collect what we needed for our new arrival. My mum had bought us a second-hand pram, a friend gave us a cot and I had found a used Moses basket for sale in the small ads of our local newspaper. It was all set up in our bedroom ready for the new arrival.
At 3 a.m. on Monday December 1 1997 I was woken up by an agonising labour pain in my tummy.
‘She’s coming,’ I shouted to Mark as I reached for the TENS machine and attached the electrode to my spine to ease the pain.
‘I think you’d better stay home from work.’ I winced as another pain shot through my body. I was two days past my due date and although it was my first child I was sure it wasn’t a false alarm.
Old Before My Time Page 1
