When she was six Hayley became obsessed by pop star Kylie Minogue. She would play her dance hit Spinning Around non-stop. Whenever Kylie was on TV, Mark and I would watch and laugh as Hayley wiggled her bony bum and waved her hands in time with the star. The Locomotion was another of her favourites. Her sister Stacey had taught her the moves and she would make us all join in the dance routine with her, standing together in the lounge, swinging our hips and jumping around like idiots. When Hayley was entered for the Child of Courage Award she had to nominate her greatest wish. It was an easy choice. ‘I want to meet Kylie Minogue,’ she said. Months had passed since the awards and I hadn’t given it a second thought. Then out of the blue I got a call from Kylie’s manager, saying Kylie had heard about Hayley’s wish to meet her and wanted to make it come true. When we picked Hayley up from school that afternoon Mark and I asked her.
‘What would be your dream come true?’
‘To meet Kylie.’
‘Well, she wants to meet you too.’
Hayley’s face lit up as if we had given her the most precious thing in the world.
On the day of the meeting, Mark and I took Hayley, Charlotte, Stacey and Louis, to a studio in London where Kylie and all her band and dancers were rehearsing for her tour. Hayley’s eyes popped out of her head when she saw some of the male dancers dressed in high-heeled boots and red masks. Then Kylie appeared and Hayley ran to her. The petite star picked Hayley up and carried her around the studio, introducing her to her band and dancers before inviting us to stay and watch the rehearsal. We sat and watched the whole run-through of her Showgirl Tour, with Kylie just inches away from us and Hayley standing beside us mimicking Kylie’s every dance move. It was so cute. When it was time to leave Kylie gave us front-row tickets for her show in London the following month.
Another of those pinch-me moments came on September 29 2004 when Hayley was chosen to be the match mascot for Mark’s favourite football team: Chelsea FC. In all honesty, I think Mark was more excited than Hayley to start with. He had followed the team since he was twelve in the days when Peter Osgood was captain. And throughout his life he had continued to support them, with his oldest daughter Charlotte following in his footsteps. James the documentary film maker, who was shadowing our family making the second documentary The Girl Who Is Older Than Her Grandmother, knew Mark’s passion and arranged for Hayley to be team mascot for one of their most important matches of the season their Champion’s League match against FC Porto.
At first Hayley didn’t seem that bothered, she was more excited to be having an extra day off school. Until a long black stretch limo pulled up outside our front door to take us to Stamford Bridge, then she went wild. In the limo journey to London, Hayley and Charlotte argued over who was the more excited. Whereas it was Mark who was the one who couldn’t contain his excitement. As the limousine pulled up outside Chelsea’s stadium, we were mobbed by fans with cameras who thought the tinted windows were hiding a football star from the public gaze. They were shocked when Hayley stepped out in her little pink hoodie and jeans and smiled for their cameras.
At the stadium we were taken to the hospitality suite and introduced to our host for the night, captain John Terry. One by one he took us to meet his team mates Frank Lampard, Joe Cole, Paulo Ferreira Glen Johnson, Eidur Gudjohnsen, Wayne Bridge, Scott Parker, Arjen Robben and even Mark’s own childhood hero Peter Osgood. Suddenly an Australian voice shouted, ‘What are you doing here?’ Turning around Hayley was surprised to be greeted by her pop idol Kylie. ‘What are you doing here?’ Hayley replied as she ran to her like a long-lost sister. They chatted like old friends, then we were whisked away to prepare for the match. We were taken to the dressing room where Hayley was given her own tiny Chelsea strip to change into before walking down to the tunnel ready for her starring moment.
‘I’m so nervous, I’ve got butterflies in my tummy, Mummy,’ she whispered as in the distance the roar of 39,000 Chelsea fans erupted around the stadium.
Holding on to John Terry’s hand, Hayley bravely walked out towards the centre of the floodlit pitch in her Chelsea kit with her pink hoodie over her shoulders to keep her warm.
‘A big thank you to our match mascot, Hayley Okines!’ the announcer said. Hayley beamed and Mark picked her up on his shoulders and walked across the pitch for a final lap of honour under the bright lights of Stamford Bridge. Afterwards as we walked back into the tunnel, Mark turned to me and whispered, ‘I’m privileged that Hayley has given us the opportunity to do things we wouldn’t normally do.’
In November 2004, Hayley had another of her wishes granted when she met the crocodile hunter Steve Irwin. She was obsessed with him and his wide-eyed adventures with the world’s most dangerous animals. She would pull her little chair up in front of the TV and sit glued to the screen as he crept up on sleeping crocodiles. When dangerous snakes wound themselves around his body, she would shout ‘crikey’ at the TV, imitating her animal-loving hero’s feigned surprise. I remember the time she met Kylie Minogue she said, ‘You live in Australia, don’t you? Do you know where Steve Irwin and his alligators live?’ So obsessed was she with him. She finally realised her dream with the help of TV show This Morning who had heard about Hayley’s wish and wanted to make it come true. Initially there was talk that they would fly our family out to his zoo in Queensland, which would have been an amazing experience, but Mark and I were worried that the 24-hour flight would be too difficult for Hayley. When the actual meeting took place it was much closer to home – just an hour’s drive away at Port Lympne Wild Animal Park at Port Lympne in Kent. Run by the John Aspinall Foundation, the zoo was well-known throughout the world for its conservation programmes in breeding gorillas and the almost extinct black rhinos. Crocodile hunter Steve was visiting the zoo to see their animal conservation programme in action and it was arranged that he would take time out to meet Hayley. The organisation surrounding their meeting was very cloak and dagger, we had to keep it a surprise with hushed telephone calls when Hayley was not listening.
On the morning of the meeting we woke up and there was layer of frost on the ground outside. We had told Hayley she was having a day off school to visit the zoo.
‘Do we have to go today, it’s too cold,’ she moaned as I wrapped her up in her thickest padded pink jacket and woolly ski hat covering her ears. It was not the ideal day for a trip to the zoo, but Steve Irwin had travelled halfway around the world so we couldn’t miss the opportunity.
‘It will be fun. We can see the rhinos and the gorillas,’ I convinced her. On arrival at the zoo we met with the head keeper and Alison Hammond, one of the reporters from the TV show This Morning, and were shown around the animal enclosures. Suddenly a jeep pulled up and the blond bundle of khaki-clad energy that was Steve Irwin jumped out. Hayley’s face was a picture.
‘Crikey!’ she said in surprise.
‘Crikey!’ he replied in his thick Aussie accent, just like on the telly. And they both laughed. Steve was her new best friend and Hayley followed him as he introduced her to the black rhinos and fed them chocolate, which Steve told her was their favourite food. It was one of those precious moments that she has never forgotten.
Before he left Steve knelt down beside her, handed her an envelope and said, ‘I know you’d like to swim with dolphins.’ Inside the envelope were tickets to a marine centre in the south of France where she could live her dream. She was overwhelmed. Then with a ‘See you later, Alligator’ he jumped back in his jeep.
‘In a while, crocodile,’ Hayley replied as she waved goodbye.
Two years later we were all saddened to hear the news that this great animal lover had been killed by one of the most gentle animals, a stingray.
At one of the many awards ceremonies we were invited to attend, Hayley got to prove she had the X Factor by meeting TV and music mogul Simon Cowell. She had become a recording star in her own right when singer/songwriter Jane Winiberg saw one of Hayley’s documentaries and was moved to write a song to rai
se money for the Progeria Research Foundation. She invited Hayley to join the Kids Choir 2000 in a studio in Southend where Voices of Tomorrow was recorded. Thousands of copies were made and sold in supermarkets, online and local record shops and we came close to making it into the top 40. So Hayley took the opportunity of giving Simon Cowell a copy of her CD and asking him to sign it. It may not have been up to Leona Lewis’s standards, but I like to think he appreciated the effort that went into making it.
With every new star she met, Hayley felt that bit more special and the publicity that surrounded many of her celebrity encounters reinforced the message that she was special. Instead of attracting stares or hurtful comments like, ‘There’s that little girl who looks like a witch,’ people would come up to us and say, ‘Hello, Hayley.’
Chapter 15
Hayley
Being Famous Can Be Annoying
THE BEST THING ABOUT having progeria is that I get to go to really cool places and meet cool people.
When I was little Mum and Dad took me to London to the Children of Courage Awards and I met loads of famous people but I was so small I didn’t know who they were.
Mum keeps loads of photos and stuff in her memory boxes. They are like shoe boxes full of things that make her remember happy times. It’s fun to sit down with Mum and look through them. There are cards and letters I have written and some of my old clothes from when I was a tiny baby. And there are lots of photos of me when I was really small with lots of different people. Mum tells me they are very famous. There is a photo of me with Prince Charles. Mum told me that I asked him for his autograph when I wasn’t supposed to. I was only five and didn’t remember doing it but it made me laugh when Mum told me. I was so little I didn’t even know who Prince Charles was. I do now. He talks posh and is a real prince. And one day he will be king.
Another time I met Kylie Minogue but it was so long ago I can’t remember much about it. We went up to London to see her because Mum said I used to like dancing to her songs like Locomotion. She was dancing with loads of men and women in funny clothes. When I saw her I ran towards her and shouted, ‘Kylie,’ and hugged her. She let us stay and watch her dance and I was dancing as well. When she was dancing she waved at me and that made me feel special. I saw her again when I was a mascot for Chelsea. We spoke for a while. It was nice that she remembered me and wanted to see me.
The best famous person I met when I was little was Crocodile Man Steve Irwin. I used to be really interested in crocodiles and snakes. It was cool to meet him at the zoo. When I heard he had died I was really upset. I thought it was strange that he was used to handling dangerous crocodiles and he was killed by a sting ray. It made me feel really lucky I had met him when I did.
Sometimes I feel like I am famous because people I don’t know come up to me and say, ‘Aren’t you the girl off the telly?’ It’s quite sweet but it can be annoying when I am with my friends. I want to say, ‘Go away and leave me alone.’ But I don’t. That would be rude. So I just smile and say, ‘Hello’.
When I am out shopping with Erin she thinks it’s funny when strangers talk to me. Just the other day we were shopping in Bexhill and a man asked me to sign his baseball hat. It was a bit weird but I did. I suppose that’s what you have to do when you are a celebrity.
The best thing about being famous is that people you don’t even know give you things for free. One day Mum said I was going to get a surprise. I didn’t know what to expect and thought maybe I was having a new game or new clothes or something. A big lorry pulled up outside the house and Mum said, ‘The surprise is here.’ I thought what can it be that it needs to come on a lorry? The surprise was wrapped in white plastic so I couldn’t see what it was but it looked heavy because Dad had to help four men to carry it into the garden. Mum told me to go inside and helped me put on my bathers and my dressing gown. ‘Is it a swimming pool?’ I asked, but she said I would have to wait and see. Then we went back into the garden a man gave me a pair of scissors and told me I could open my surprise. I cut the wrapping and I could see it was wooden so I thought that maybe it was a new Wendy house. Mum and Dad helped me to pull off the plastic and I could see it was a big kajuzzi like the one I went in at the hospice but without the water. ‘It’s a hot tub of your very own,’ Mum told me.
‘Cool,’ I said. I had to wait ages before I could use it because we had to fill it with water and a special liquid to keep my skin soft. When I got in it was lovely and warm like being in a big bath and the water squirted on my shoulders and my back. It felt lovely.
Mum explained that a lady had seen me on the television when I was in the kajuzzi at the hospice and it was her job to sell hot tubs. She said she wanted to give me one of my own because I loved them so much, so that’s why I had it. I thanked the lady who brought it for me. It was a nice thing to do, I thought.
That’s the thing about progeria, it has made me famous and that makes me happy. It’s much better than having people staring and pointing at me.
Chapter 16
Kerry
Family Planning
I HAD ALWAYS DREAMED of a large family and desperately wanted Hayley to have brothers and sisters to grow up with. When doctors told us that the rare gene mutation causing progeria was not passed from parents to child and there would be a 95 per cent chance of having a normal baby after Hayley there was no medical reason not to. Or so I thought. Mark was not of the same opinion. After the initial shock of Hayley’s condition, he had adapted to his role as dad to a progeria child but he wasn’t keen to have more children.
A couple of weeks after we got back from our first trip to Disney World in 2000 I discovered I was pregnant. But it was not to be and I had a miscarriage after 10 weeks. It hit me for six. We’d just had our first scan photo and it was our baby so to have it taken away really hurt me emotionally. You would think after this close call we might have been more careful, but six months later I missed another period and again the pregnancy test showed a positive result. This time it was twins and again I lost them both – one at eight weeks and the second a fortnight later. The grief from both losses hit me hard, but I didn’t feel I could talk to Mark. I worried that I would never be able to carry a normal, healthy child to full term.
Mark eventually came to understand how important another child was for me and we sat down and talked. For the first time in our relationship we had a conversation about family planning.
‘I would like a son,’ he admitted. ‘One I can teach to play football and take to watch Chelsea play.’ We sat around a calendar and worked out the best time for us both to have another child. We both agreed that we didn’t want to miss out on the Progeria Reunions held every June. Some of the airlines refused to carry heavily pregnant women, so we decided that a May conception and a February birth would be the best time.
As we had already discovered our attempts at family planning were not the most successful. Within a few weeks of this conversation I missed a period and a test confirmed I was indeed expecting. It was September, I remember because I was sitting on the sofa waiting for the pregnancy test result and watching helplessly, along with the rest of the world as terrorists crashed two aeroplanes into the Twin Towers. I was given a due date of June 13 2002 – a week before the Progeria Reunion in Florida. Great timing again, I thought.
During my pregnancy my doctors took extra precautions and I was given scans at almost monthly intervals to check on the baby’s progress. At 21 weeks, to Mark’s delight, we were told it was a boy. I wanted to call him Lewis. It was a name I had always liked but Mark refused as Lewes, spelt differently but pronounced the same, was the name of a Sussex town just a few miles from where we lived. So we compromised and called him Louis.
When I told Hayley, ‘Mummy is going to have a baby,’ she was excited by the idea of having a younger sibling.
‘Don’t worry Mummy, I will help you look after him,’ she said in the earnest way of a five year-old.
On June 18 2002, five days later than expect
ed and after a 27-hour labour, Louis was born in the same hospital as Hayley. He was covered in jet black hair and weighed 7lb 14oz, 1lb 8oz heavier than his sister. When Mark brought Hayley in to hospital to see him for the first time she was fascinated by his thick black hair.
‘Louis has brought you a little present to say hello,’ I told her pointing to a small gift-wrapped box beside Louis’ cot containing a DVD of the Little Mermaid film.
Hayley was thrilled and kissed the top of Louis’ silky black head to say thank you. It was the start of a strong bond between brother and sister.
Back home, Hayley became Mummy’s little helper. Whenever Louis cried to be changed, she would run off and bring me a clean nappy and nappy bag. And when he was being fed she would sit beside me as I breast fed him calling him a ‘little piggy porker’. One thing was for sure, I never had any worries about Louis’ growth. At every check up he gained a pound or two. Whereas Hayley never registered on the baby growth charts, Louis was following the 75 per cent arc of the percentile baby chart, meaning he was always way above average. I was a more relaxed mum too. After all the stress of Hayley’s first years of life, I adopted a more laidback approach with our son. We were told there was no risk of him carrying the defective progeria gene and had full faith in the doctors. It was some years later that our Belgian friends the Vandeweerts proved science wrong with the birth of their second progeria child, Amber. So when Louis screamed with colic I wasn’t overly worried. I would gently rock him in my arms and Hayley would sit beside me and stroke his head until he settled. At this time we were living in a three-bedroom house with Mark’s youngest daughter Stacey, so space was at a premium. When Louis was old enough to sleep in his own bed, he moved in to share Hayley’s pink bedroom.
Old Before My Time Page 8
