Old Before My Time Part 10

OMG! It was no hoax. It was real. Justin's manager explained how they had been alerted to Hayley's wish on Twitter.

Hayley had been Tweeting about her Bieber Fever and a group of girls in America and the UK, who were following her on Twitter, had taken it upon themselves to make her dream happen. They had set up a hashtag #BiebsmeetHayley. Not being part of the Twitter generation I didn't really understand how these things worked. But it appeared that Hayley's friends had created a plea to Justin Bieber begging him to make her dream come true. This message went viral spreading from the original five girls via their followers and their followers' followers until it became so huge that it was one of the 'trending' most popular topics all over the global site and the girls who started it all made the news in America. That's when Justin Bieber's managers heard about it and tracked us down via Hayley's website.

I couldn't begin to imagine how excited Hayley would be. It was the kind of present no money could buy. She was going to meet the hottest teen pin-up in the world? If anyone had told me that I would meet George Michael or the guy from the Levi jeans commercial when I was 13 I would have burst. I knew it was going to make Hayley's day. All I had to do was get her to London without raising any suspicion.

Chapter 31.

Hayley

I Felt Sooo Lucky to Be Alive

I WAS REALLY EXCITED because I was going to be a teenager. My drugs were working and making me live longer. I thought that when I was 13 I would be grown up and my mum would have to let me go to the shops on my own with my friends. Usually she doesn't like me going out without her, she worries something will happen to me.

When Mum asked me what I wanted to do for my birthday, I said Justin Bieber. That would have been the best present in the world. But I knew I probably couldn't have that so instead I said I would have a sleep-over. I like having sleep-overs. Usually Ruby and Louis go to stay with Dad when my friends sleep over. We have dinner, and then play on my Wii games and watch DVDs. Usually if it's just my friend Erin we sleep in my bedroom. If I have two or three friends we pile up the duvets and pillows in the dining room and sleep there. I always sleep on the sofa because it's comfier for me. We get to stay up really late, until the early hours of the morning sometimes, just talking. If it's really late Mum texts me and says go to sleep. For my birthday Mum said that I could ask my friend Jessica, who is really funny, to sleep over with my cousin Sophie, who is 10, and her friend who is also called Jessica.

I have been lucky, I have had some really cool birthdays. Once I went to France to swim with dolphins. I don't remember a lot about it except that the water was cold and we played soccer with them. I have a video of me with the dolphins which is funny to watch because I looked so little. Another year I remember going to the pyramids in Egypt and there were lots of kids gathering around Ruby because she was so little. I was glad they weren't all looking at me because I would have been scared. For my 12th birthday we went to see the dolphins in Discovery Cove in Orlando and it was really nice. We had a private little bit with drinks and stuff that was fun. In France I stood in the pool but in Orlando we got right in with the dolphins and held on to their fins while I swam. I had to wear two wet suits so I wouldn't get cold. I held on to the dolphin's fin and it dragged me through the water. It was quite scary as I almost slipped off and the water was quite deep and I wasn't wearing a life jacket.

I hoped that for my 13th birthday maybe Mum might be planning a surprise party for me as well as the sleep-over. Mum is not usually good at surprises. I remember one year when I was four or five she picked me up from school on my birthday and told me she had a surprise for me. I said 'Am I going bowling?' She asked me how I guessed. I said that I heard her talking to someone on the phone. Mum was disappointed that I found out but I said, 'We can still go bowling; it just won't be a surprise.' That was the same year that Mum and Dad bought me a costume like Tinkerbell the fairy and I wanted to wear it bowling because I thought I looked gorgeous, but Mum wouldn't let me. When we got to the bowling alley Nanna and Pops were waiting with my Auntie Janie and my cousins Sophie and Jack and they all said surprise. I didn't know they were coming so it was a bit of a surprise after all.

One day before my 13th birthday I overheard Mum talking on the phone to someone called Alison. She was talking about meeting somewhere, but I couldn't hear what she was talking about. When I asked her who she was talking to, she said, 'just a friend'. I thought that was suspicious as she usually tells me the names of her friends. I thought it might be Alison Hammond, who we had been watching on the TV programme I'm A Celebrity Get Me Out Of Here. She was also on the TV show This Morning and was there when I met Steve Irwin for my birthday so I thought that maybe Mum was planning a surprise party for my 13th birthday. She said we were going to go shopping in London for my birthday. I have been to London lots for hospitals and when I am interviewed on TV but I had never been shopping before. I didn't know what sort of shops they had there, so I said it would be cool.

I was on Facebook the day before my birthday and I had some messages from my friends Emily, Charlie, Lauren, Casey and Sydney. They had made a video and posted it on YouTube. It said: 'December 3 1997, the most precious little girl was born. She goes by the name of Hayley Okines. This girl is a pocketful of sunshine. She's so sweet, so kind, so loving, so caring, and so full of smiles and so many other incredible things. You've grown so much from a young baby to a young adult. Happy 13th birthday Hayley. We all hope you have the best birthday ever. We hope you live plenty more years filled with health, happiness, smiles, laughter, friends and family. We love you so much from all the girls in BiebsmeetHayley.' On the video loads of girls who were my friends held up cards and said happy birthday. It was so sweet. I had never met Emily, Charlie, Lauren, Casey and Sydney before but they had seen me on telly and asked to be my friend on Facebook.

Lots of my friends love Justin Bieber and when I said I would love to meet him they put it on Twitter. It said 'Justin, Hayley is fighting for her life. It's her dying wish to meet you, please help make it come true. We love you Hayley.' #BiebsmeetHayley. Loads of people Tweeted it around the world and it got so big that the girls got to be on TV in America.

I have liked Justin Bieber for ages I first heard him when I was round my friend Lydia's house and she was listening to him. I thought, who's this? And she showed me his video on YouTube. He was really fit. Then I got a bit obsessed and started playing his music all the time on YouTube. I cut out his pictures and stuck them on my bedroom wall. Lydia bought me a giant poster for my birthday which is like almost as big as real life. Last Christmas Mum bought me a Justin Bieber calendar. I had it on my bedroom wall until Ruby started kissing it, which is so annoying because she was never bothered about him till I started liking him. Mum had to move it where she can't reach it. I can't reach it either but I don't want to kiss it all the time like her. My friends on Facebook like him too. We always talk about what it would be like to meet him and what we would do. I think that maybe I am his biggest fan.

I hoped that one day I could meet Justin Bieber. My friends in America said they hoped that one day they can meet me which is really sweet. I have asked my mum if we can make it happen and she says 'We'll see.' It makes me happy when everyone says nice things about me!

On the day of my actual birthday I had lots of cards and presents and 110 in money. Mum took me shopping in the morning. We bought cake and crisps and chocolate for my sleep-over. The next morning after the sleep-over, my friends went home and me, Mum, Dad, Ruby and Louis and my cousin Sophie went up to London shopping.

When we got there Mum took us into this really posh hotel. I asked her why we were going there. She hesitated and said we were going to get coffee because it was cold outside. I said to my cousin Sophie that doesn't sound right. It was weird because I am always the one that gets cold and I always have to wear a cardigan even in the summer because I have progeria and I don't have much body fat to keep me warm like other kids. Anyway we went into the hotel and I took off my gloves and hat. I said I wanted to go to the toilet so me and Sophie went to the toilet. While we were in the toilet Sophie said to me, 'What would you do if Justin Bieber was here?' 'I would scream,' I said. When I came back I heard Mum on the phone to that woman called Alison again. I thought it must be the one from This Morning. Mum told us to go upstairs and wait for her. So we did. When we came back Justin Bieber was standing there. I thought, that's not possible. It can't be Justin Bieber. But it really was. I tried to play it cool but I screamed and ran towards him and hugged him. My arms only reached his waist because he was really tall. But he put his arm around me and I kept thinking, I am the luckiest girl in the world. Justin Bieber is holding me! We sat down next to each other and we talked about my friends and my progeria and how cool it was to meet him. Then he asked what I wanted for Christmas and I said, 'You!' and he laughed and I went a bit red. Then he said he was going to be on X Factor the next night and asked if I watched X Factor. I said I would definitely watch it if he was on. And he laughed. He said he was coming back to Britain to do a concert in a couple of months and would I like to have front-row seats. I just said, 'Yes please!' I thought, it can't get any better than this. My life is complete.

Before Justin left Mum got her camera out and asked if we could take a picture. He put his arm around me and smiled and I smiled back my biggest smile ever. My favourite song of Justin's is U Smile. In it he sings, 'When you smile, I smile.' I thought this is true it's really happening.

When we were going home I said to Sophie, 'Did you know we were going to meet Justin Bieber?' She said she didn't and I believed her.

When I got home I went on Facebook and said I had met him. All my friends like him even more now. They say he is a caring person. Even Mum said he was lovely and normally she only likes men with big guns that's what she calls muscles. Meeting Justin Bieber was definitely the best day of my life ever!

I didn't think it could get any better but then three months later on March 17 2011 we went to see him in concert in London with the front-row seats he had promised and I got to meet him again. I went with Mum, Erin, Auntie Janie and my cousin Sophie. Before Justin came on stage we saw Willow Smith. She is like only eleven and is a really big pop star. Her dad is the famous movie star Will Smith. When she was on stage she saw me in the front row dancing and waving and she waved back. When she finished singing one of the bodyguards came up to Mum and said Willow would like to meet me back stage. I thought that was really cool. We went back stage and everyone was looking at us thinking, who are they? Why are they going back stage? I felt really special.

Back stage Willow came out of her dressing room to say h.e.l.lo. She was really wicked. I said I thought she was a really good singer and she asked if I would have my photo taken with her like I was the famous person not her. Then she asked for my address and gave me her email and told me to email her anytime.

Then who should come along but Justin Bieber. He was even nicer than I remembered the first time. And he actually remembered me and thanked me for coming. I said it was OK, he didn't have to thank me. I felt good to think that he sees loads of girls all over the world but he remembered who I was. Mum asked if he would do a video for my new website. He looked at the camera and said, 'Hi. Welcome to Hayley's new website.' That is so cool I can't wait until Dad gets time to put it on my new website. How many girls can say Justin Bieber has given them a special message? Then I thought how many girls can say they have met Justin Bieber twice! I felt sooo lucky to be alive.

Chapter 32.

Kerry

The Future

AS I HAVE SAID many times, I believe that Hayley will be the one child to prove the experts wrong, and so far I seem to be right. She has grown into a stroppy teenager with a stinking att.i.tude to match. Like many girls her age she thinks she has a G.o.d-given right to leave all her books and clothes strewn across her bedroom and, when I ask her to do something, she constantly mutters under her breath. I should get annoyed with her, but I just feel relief that she is a normal thirteen-year-old. She has even reached p.u.b.erty, something we were originally told would be unlikely to happen.

Whenever I look at Hayley and see how happy and well-adjusted she is it, I am always reminded of those early days when I wanted to take both our lives. Now I am so glad I never carried out my plan. I would have robbed her of an extraordinary and long life. Hayley would never have made the good friends she has or met all the famous people and other special children.

Having a child with a terminal illness has made me a stronger person. There was a time when I couldn't talk about death without bursting into tears, but now I appreciate life and family. I never take it for granted that my family will always be there and I have learnt to enjoy life and appreciate people, especially my mum, while I can. That's not to say I don't have my moments. There are times when all the children are in school and I am sitting alone in the house and I try to imagine what life would be like without Hayley, not being able to see her sitting on the sofa, or her iPad left on the chair. Then I think of the wise words of a friend who lost her daughter to progeria when she was fifteen: 'Don't waste your time grieving for Hayley when she is here. Make every day count.' And I soon snap out of the negative thoughts and get on with life.

No matter how much I try to protect Hayley in our daily life, there are some things on the internet that are beyond my control. Just the other day my brother called and I could tell by his voice he was upset.

'Are you OK?' he asked. 'Yeah we're all fine,' I replied and immediately I could sense a change in his voice.

'I just saw on the internet that Hayley had died.' I rea.s.sured him that everything was fine but I could tell he had been shaken. When I put the phone down, I Googled Hayley's name and sure enough there were thousands of people writing on their blogs and websites that Hayley had died. It didn't bother me that these rumours were spreading, because I knew they were lies, but it shook my brother who believed what he had read. I sat down and wrote, 'I am Hayley's mum and Hayley is running around in the garden perfectly fine,' hoping to put an end to the Chinese whisper. When Hayley found out about the rumour she just shrugged her shoulders and said, 'That's OK, I've read that Justin Bieber has died six times.'

At times I have to monitor the message board on Hayley's website to filter out any nasty comments. Although the internet has been responsible for many good things in Hayley's life, like the meeting with Justin Bieber and the fund-raising for the UK Progeria reunion, it can also bring some ignorant and hurtful comments like, 'Why has that girl got a bald head?' or 'That girl looks so weird.' It's quite normal for Hayley to get up to one thousand messages a month, sometimes even more if one of her doc.u.mentary programmes has been shown somewhere in the world, and the majority of comments on her page are always positive and talk of Hayley being a 'ray of sunshine' or a 'true inspiration' but it's hard for me to ignore the nasty ones, which I see as a form of cyber-bullying. Recently a boy posted a message on my Facebook page: 'Your child looks like an alien and I'm an alien mother from s.p.a.ce. I'm going to come down and take my baby.' I wrote back: 'You pathetic boy, take a good look at yourself in the mirror before you criticise other people.'

The drug trials have been a great help in keeping our hopes alive. We are still waiting for official results from the first FTI trial, which are four years overdue, but so far there is nothing. We continue to allow Hayley and other children to be treated like guinea pigs without having definite answers. But what choice do we have? Without the drugs we all know what the prognosis is. I take heart from the fact that since the trials started I have not heard of one child who has pa.s.sed away whereas in the past at least one to five children would pa.s.s away each year. We're also encouraged by what we see with our own eyes. We don't need doctors to tell us that Hayley is looking healthier. Instead of shrivelling like some of the wizened children we used to see on the internet, she is flourishing. Her facial features have filled out; she has gained weight and has moved up to an age 5 clothing. Her blue eyes sparkle brighter than ever.

The research into a cure is speeding ahead. The second trial is coming to an end and in 2012 we will take part in a third trial. We have not been given any official confirmation of what this trial will be but recently there have been news reports about a drug which the media has called the 'forever young' drug that could make us all live 10 years longer. I hadn't connected this drug with Hayley's progeria trials until I got a call from a journalist asking what I thought about this new 'elixir of life' drug Rapamycin. When I checked it out on the Progeria Research Foundation website I discovered that the scientists in Boston had published the findings of their latest experiment. Using the progeria cells and tissues taken from Hayley and some of the other children at earlier trials they had been testing this drug and discovered that it 'flushed out' the defective protein from the progeria cells making them healthy again and extending their life. The drug had also been given to mice and found that they were living a third longer.

It's incredible to think that Hayley, Michiel and others like them could be paving the way for generations to live longer and healthier lives. But on a purely selfish note I hope it will extend Hayley's own life even further. Like all good things Rapamycin has a downside there are higher risks. The drug was originally found in bacteria in soil samples from the Easter Island in the 1960s and is currently given to transplant patients to stop them rejecting their donor organs. Some of the side-effects are that it increases cholesterol levels in patients and suppresses their immune system, making them more vulnerable to infections. I am not overly concerned as Hayley has always had a reasonably strong immune system. Apart from a few throat infections when she was a baby, she has never suffered from any infections of bugs like her brother and sister. I think all the drugs she takes actually make her stronger. And we know that her cholesterol level is in check because of our regular check-ups with Dr Whincup, so we are hoping Hayley will be able to withstand any adverse effects. Dr Gordon at the PRF has told us they are waiting for the go-ahead to use a modified version of Rapamycin that has fewer side-effects, so once they get the approval we'll be off to Boston again.

We are still struggling financially, but we manage. Mark is job-hunting and although I am officially Hayley's full-time carer, money is tight. I am always amazed by the generosity and good will of strangers who send cheques to Hayley's Fund. Her website even has a PayPal link, where people who have heard of Hayley's condition through her TV doc.u.mentaries or various media interviews can make donations if they wish. That money helps to pay for her days out and special holidays. We also have a PO Box and it is quite normal to open it and find anonymous cash gifts or gifts for Hayley. Bandanas are a common item. Initially we would thank everyone personally but over the years it has become impossible to answer all the well-wishers. Since the separation I have resigned as vice-chairman of Hayley's Hope charity but Mark's daughter Charlotte now fills the role. Once again the charity is organising another Progeria Reunion in the UK at the end of October and many of the donations go towards this. Fortunately the Progeria Research Foundation continue to fund the travel for Hayley and me to visit America regularly, but if there ever came a time when they could no longer afford it I would happily take out a bank loan and run up a debt to ensure Hayley gets the best treatment available.

No longer do we live for each day like it was Hayley's last, we are planning ahead. Soon she will be 14 and I want her to have success and ambition. For years she has nagged me to buy her a puppy and in the past I have resisted thinking it would be too boisterous but last year Christmas we bought her a Shih Tzu puppy which she named Angel. Angel follows her everywhere. She is also talking about going to college in Eastbourne or Hastings to study hairdressing and beauty with the idea of opening her own salon. She has also started talking about learning to drive and what car she would like. I have three years to save up for driving lessons because I know in my heart she will get behind the steering wheel and I can't wait to watch her take her first kangaroo jumps along our road in her instructor's car. I also need to give her more freedom. Like all teenage girls, Hayley loves shopping and wants her independence to shop with her friends. I drive her to the shopping centre and wait outside in the car while she and her friends shop or I allow her to go to her friend Erin's house. She always carries her phone on her and knows I am never more than a call away.

My biggest fear is that when her time comes I am not going to be there. I try not to think about it but I can't help myself. It's the last thing on my mind when I go to sleep at night and the first thing I think of when I wake up in the morning. If she is upstairs in her bedroom reading quietly, I shout up the stairs, 'Are you all right?' and she always replies with a bored, 'Yes, Mum.' Or if I hear a bang, where she has dropped her book on the floor, I fly up the stairs expecting the worst. I try to hide my fears from her most times.

I truly believe there is life after death and that has helped me through the tough times. I belong to the spiritualist church and one evening as I was leaving the house for a church meeting, Hayley asked, 'Do you believe in angels and fairies, Mum?'

'Of course I do. You're my little angel, aren't you?' I replied trying to keep emotion from my voice.

'I know that Maddie is an angel in heaven. And one day I will be an angel too. When I am an angel I will sit on your back and blow in your ear,' she said.

I take strength from the belief that whatever the future holds, Hayley will always be my angel.

Chapter 33.

Hayley.

Eighteen for Ever.

MY ONE BIG WISH is to have my eighteenth birthday and stay eighteen for ever. I think it would be cool to be eighteen because I will be old enough to drive and I can get a job and have a house.

Me and Erin have our futures all figured out. We are going to own a hair and beauty salon together and live in a really big house. Erin says we should go to New York and live in Grand Central Station but I would like to live in Hawaii because I've heard that it's really hot and sunny there and it seems really nice.

If I can't live in Hawaii then I would like to live near my Nanna. On the way to Nanna's house there's a big wooden house for sale. I don't know how much it is but I want to save up enough money to buy it. I will have a big Jacuzzi bath and flat-screen TVs in every room and Nanna and Pops and Mum and Dad can come and stay with me. Ruby and Louis can come too as long as they promise to be good and not fight. I also want to have another dog to keep my dog Angel company. Maybe a Chihuahua or a Yorkshire terrier because they are small and cute and I can dress them up in bootees. I want a husky too because I love their eyes, they are blue like mine.

When I leave school I want to learn to drive and I want a Mini Cooper or a VW Beetle in pink. When I was out shopping with Mum the other day she pointed to a small car called a Smart car that looked like a bubble and said that's what I should have. I said, 'No way. It's not cool enough. I want a Mini.' I would like my Mini to be a convertible so I can drive down to the beach in the summer with my friends, roof down and music on my iPod. I am a little bit worried about how I will be able to drive if I sit in the driver's seat and my feet can't reach the pedals. But Mum says I can have a special automatic car with controls on the steering wheel instead of pedals, which would be really cool.

I think that maybe when I grow up I will get married. But I'm not sure if I want to have children. Ruby and Louis have definitely put me off. I don't have a boyfriend and I'm not interested in boys at the moment. Mum says it will have to be someone very special to see beyond my progeria.

The drug trials have been going OK. I have grown a little bit and have put on a bit of weight. Everything looks all right. When the doctors smile it usually means it's good. Next year I and Mum will be going back to Boston for our third drug trial. There is a new drug called Rapamycin which they say cleans the cells of progeria and can make you live longer. They have said it will be another tablet that I can take with the FTI, bisphosphonate and statin to help me live longer. The woman at the Boston Hospital said to Mum she could not tell her the name of the new drug. But then we read stories on the internet that it was called the 'forever young' drug which they reckon can extend human life for everyone up to 10 years. They are experimenting on progeria children like me. It's good news because if this drug works I could live longer but there is talk that it could be used for everyone. It's been called the 'elixir of youth' which sounds like something from a s.p.a.ce movie. I'm really excited because what we are doing could change things for everyone in the world not just a couple of hundred progeria children which is really cool. In some ways I feel less like a guinea pig because the new drug is not just for us progeria kids but for everyone. But I also feel more like a guinea pig because we are the ones who are going to be taking it to see if it works. They have only tested the drug on mice so far, so I would be the first person to take it which is quite scary. But it's really cool when I think that everyone, even Mum and Dad and Nanna and Pops, could live longer because of a drug I am taking.

Because of the drug trials I feel like I have a future to plan. I feel taller and I'm growing lots of hair. I am also getting bigger; I used to wear age 23 clothes before I started the trials now I am wearing age 45. The other day Mum bought me new trousers for school and they were age 6.

And to all the doctors and people who said there was no hope for children with progeria and they don't live long I want to say, 'You're wrong.'

Find out more about the extraordinary life of Hayley Okines.

Follow Hayley's blog @ hayleyokines.wordpress.com.

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