Old Before My Time Part 9

Hayley

Just Call Me Robo-Chick

EVERYONE TELLS ME I'M brave. And when I go to hospital I try to be brave. But when I'm not in hospital I'm a big wimp. I'm even scared of spiders and the dark.

When Mum told me about the new drug trial, that had to be injected, I wasn't very keen on the idea. I don't like having needles but I thought, if it will make me better, then I have to do it I suppose. I asked if they had tablets I could take instead of having an injection but they didn't. The injection was a bit scary, I was worried in case anything went wrong. First I had to have a little needle stuck in my arm and taped over, then they put another needle with the drugs into it. The needle hurt when it went in the first time and I felt a bit sick. I had a tube coming out of my arm which went to a machine with numbers on it. I couldn't really feel the bisphosphonate going into my body. It was going so slow, it made a snail look like a cheetah. I had to lie there and do nothing for ages. Then I had to take some medicine because they said I might have headaches, or achey bones and stuff, but all the time I have been taking the drugs nothing has been wrong. I take them to make sure. If they say it will make me better I might as well take it, that's what I think.

When I dislocated my hip the first time, Mum said I was really brave because it hurt so much. It hurt even more when I did it the second time but I wasn't so scared because I knew what to expect. It happened again when I was in the kitchen with Mum. I asked if I could jump on a washing machine tablet to burst it. I stomped on it and it didn't pop so I started jumping on it with both of my feet and I twisted wrong and my hip popped out again. My mum called an ambulance. I just thought, here we go again, while mum was crying. I was in so much pain it was horrible.

The third time it happened I was having a sleep-over with Erin and my cousin Sophie. Me and Sophie were lying on the bed and Erin was on mattress on the floor. I was doing Sophie's make-up but I couldn't see very well because it was a bit dark. So I went to open the curtains and I twisted on the duvet and I felt my leg pop out. We had to cancel the sleep-over and I had to go to hospital again, which was bad.

After that the doctors said I should wear a brace. I said, 'No way!' It was a big ugly metal thing that they said I would have to wear for six months. It looked really uncomfortable and I didn't want to have it. Mum said that maybe there was an operation I could have but I would have to stay in intensive care for a week and stay in hospital for a while. Then I would have to stay in bed, but I didn't want to do that either. Anyway the doctors put my leg back in and I went home.

I was happy when Mum said I didn't have to go to school because of my hips, so I could do my work on the computer instead. I had to do maths, English, science and citizenship and it was much better than having to go to school. After school Erin would come round to my house and we'd catch up on all the gossip so I didn't feel like I was missing anything. Whenever Erin comes to my house she likes watching the Disney Channel because she says her mum can't afford it at their house. We watch Hannah Montana and sometimes we watch the Music Channel but not much. Other kids in school like the Music Channel but I think music videos are boring unless they are by Justin Bieber. I like cartoons better, they make me laugh.

The last time I dislocated my hip happened I was walking up stairs with my dad. I was three steps from the top when I caught my toe and twisted funny. I didn't even fall because Dad caught me but I felt both my left hip and my right one pop out. I could tell that Dad was scared because he had never seen me do it before. He tried to lift me up but he couldn't hold me under my b.u.m like he usually did because it hurt too much. So I had to put my arms around his shoulders and hold on tight and he held my body and carried me into the bedroom. I said to him 'I think I've done the other one.' I started to cry because I was so uncomfortable. When I hurt my left hip I could lie on my right one so I could ease the pressure. But I couldn't lie on either side because it hurt so much. So I had to lie on my back. I was crying. Louis and Ruby were crying too because they were scared for me. They were both really helpful. Ruby watched out for the ambulance and Louis was rubbing my head and my hand while we waited for the ambulance.

When we got to the hospital I had gas and air again. I love that stuff. It doesn't smell or taste of anything but when you breathe in it makes you feel like you're away with the fairies. I took three puffs and I started giggling. Just before I went under the nurse was holding my hand. Dad took Ruby home to fetch my pyjamas and Mum and Louis stayed by my bed. Louis was so sweet as I was going down to the operating theatre he was holding my hand and rubbing my head and it made me cry.

After I came around from the operation Louis was really scared for me. I said, 'Don't worry, it won't happen again.'

That's when the doctors said I had to wear the dreaded leg brace. It's horrible. It has a big thick metal belt that goes around my waist and metal rods that are strapped around my legs. Mum calls me 'Robo-Chick' because I look like a robot when I am wearing it. The only good thing I can say about it is that it is purple and that's my favourite colour. The first time I only wore it for four hours and then I took it off and said, 'I can't wear that.' It was too uncomfortable. I am supposed to wear it for six months, 24/7. The only time I take it off is when I have a bath or shower and I'm not even supposed to do that. It's really annoying. I thought it might be a bit comfortable because it had purple padding around it, but it's not. When I sit in the car I can't even lean back because it sticks in me and hurts. When I am lying in bed it feels horrible and I can't move. If I want to go to the toilet in the night I have to wake Louis up and ask him to take it off for me, because I'm not supposed to. In the beginning I used to wrap my cardigan around it to hide it when I went out because it looked so bad. I'm stuck with it until my hips get better. I suppose it's better than being in a wheelchair or intensive care or something. I'm getting used to it now, I don't care so much. I've found that I can tuck my iPhone into it so it has its uses after all. But I am counting down the days until the time I can take it off for good and my legs will be better.

Chapter 28.

Kerry

Pressures of Progeria

THEY SAY THAT DIVORCE, debt and moving house are the most stressful things in life, but I bet the people who said it have never tried to organise a holiday for progeria families. When the Sunshine Foundation charity, which had organised the American reunions for the previous 27 years, announced it had to cancel the 2010 reunion due to the worldwide recession, the drop in the number of charity donations and the spiralling costs of making it happen, Mark and I decided to step in.

'The reunions have been a lifeline for so many families like us. It would be such a shame for the children if they stop for ever,' Mark said when we first heard the news. So in a moment of what I can only now call utter madness, I said, 'Let's organise our own.' For years we had said how great it would be to organise a reunion in England, now we were putting our talk into action.

Working closely with our friends at the Progeria Family Circle, who held annual conferences for all the families in Europe, we arranged a date and place August 6 to 12 2010 in Ashford, Kent. The location was close to our home but also close to the ports and airports for the families travelling across the English Channel. As word spread of our plans 16 families signed up for the holiday. There was just one problem, we didn't have a venue or any money to pay for it.

'We're going to have to pull our fingers out and get moving if we're going to have a reunion in August,' I said to Mark one day in February. 'We've only got six months. We don't want to let everyone down for a second time.'

First I had to find a venue. I rang one hotel which looked out over the beach in Hythe.

'I've got a budget of 17,500 and I need 32 rooms with breakfast included for six nights from August 6 to 12,' I bluffed. Actually we had only 700 in our reunion fund. The person on the other end of the phone went off and came back 10 minutes later saying they could do it for 14,500. It was under budget but still 13,800 more than we could afford. With that figure in mind I rang around a couple of hotels to see if I could get a better deal. The events manager at the Ashford International Hotel came up trumps. For the same price they would match my other quotes and throw in lots of extras including the farewell party on our last night. Plus they had a swimming pool. It was a deal. Mark and I had just 161 days to raise what was the equivalent of almost a year's wages. No pressure!

Cap in hand, I went to every well-known charity I could think of. The National Lottery's Good Causes, Comic Relief, Children in Need, you name it, I tried it. But it seemed that with every application I made, I faced rejection. It wasn't a community event. We didn't have criminal record checks on all the people we were inviting. Most of the children were not based in the UK. The list went on and with every 'no' I received I became more depressed. The Progeria Family Circle had agreed to pay for the hotel accommodation for the visitors but Mark and I still had to come up with the cost of the flights, day trips and food, We still needed to find thousands of pounds in cash and goodwill to make it a week to remember. With a couple of months to go we checked our measly total. 'We're going to have to cancel,' Mark said.

'No way. We can't let the children down. We'll have to take out a bank loan,' I replied, kicking off what turned into an almighty row. Our relationship in recent years had been rocky to put it mildly, but the pressure of organising the reunion was pushing us to the limits. We seemed to be fighting over anything and everything.

Then in June less than two months before the reunion Hayley's latest TV doc.u.mentary The 96-year-old Schoolgirl was broadcast on Channel 5. Filmed over three years, it followed Hayley as she went through the first drug trials in Boston and the early days at secondary school. Suddenly money started rolling into Hayley's Hope charity from the appeals we had posted on Hayley's website and her Facebook page.

With a healthy bank balance we put our differences aside and got on with the organisation. We booked the flights for all the families and set about planning days out for our guests. The first day would be an arrival day to give the families time to unwind. The second day we organised a meet and greet for all the families. Most of the families knew one another from previous events but there some new faces including Harry Crowther, an 11-year-old from Yorkshire with A-typical Progeria, and Angela from Glasgow who had lost her daughter Claire six years earlier and was attending her first reunion after finding us on Facebook. For the children we laid on face painting, arts and crafts, football games, a bouncy castle, an ice cream van, a popcorn machine and chocolate fountains. For the mums I planned an afternoon of shopping when we left the children with the dads and went off in search of bargains at the local outlet shopping centre. Mark decided he would take the dads to the Shepherd Neame Brewery for a guided tour and tasting. The Port Lympne Wild Animal Park, who had helped to make Hayley's wish come true to meet Steve Irwin all those years earlier, donated a safari day out for all the children to meet snakes and spiders and giraffes and gorillas. Another local attraction, Leeds Castle, opened its doors to us and laid on lunch and presents for the children in medieval marquees on the lawns.

The reunion was a huge success. All our progeria family friends congratulated us on making it run so smoothly. But the stress had taken its toll on Mark and me. We bravely put on a united front for our guests but behind closed doors we were fighting more than ever. There were only two levels of communication between us raised voices or awkward silence. Throughout the week I had bitten my tongue on many occasions to prevent a full-blown public showdown. When we were alone we said the most hurtful things to one another.

'You only used me to get pregnant,' Mark shouted at me. 'Yeah and you couldn't even do that properly,' I snapped. It was well below the belt and I knew there was no going back.

The farewell party on the last night was more emotional than ever for me. Not only was I saying goodbye to all our friends, not knowing if I would ever see any of the children the following year, but my head was in the shed. I wanted out of my marriage and I had to make a decision on the future for me and the kids. Should I stay knowing I could never be happy? Or should I make the break? I struggled to put on a false smile for the final night and the next morning when Mark got up to drive one of the families to the airport, I packed our bags and fled. We didn't even have time to say goodbye. I called my mum.

'I'm leaving Mark, can you fetch us?' Mum arrived and drove us back to their home where we stayed for two months until I could sort out the end of our relationship.

In my heart I had known for a couple of years that our relationship was going nowhere. The only thing we had really ever had in common was our love of dance and all-night raves. But with three children that life was long gone. Without it there was nothing except the children. We had grown apart. I had lots of friends and I liked going out at weekends. Mark was happy sitting in front of the computer. Where we had once bounced off one another and made each other laugh, now we just avoided one another and made each other mad. At one point I had suggested a trial separation but Mark refused, believing that once we parted we would never get back together. We had even tried counselling under the misguided notion that we should try to make things work 'for the sake of the children'. But these sessions only proved to me that we were beyond help. We were given exercises to help improve our relationship. Once we were told we had to make an effort to thank one another every time we did something good for one another. 'Thank you for putting the bins out,' I would say to Mark. To which he replied, 'Thank you for doing the washing.' It just felt unnatural and proved to me that our relationship was beyond repair. This really hit home when we were asked to list 10 good things about each other and 10 bad things. I had no trouble listing the bad things. Why stop at 10, I thought? But when it came to the good things beyond being a good dad and being good on the computer, there was nothing. On his part he said I was a good cook, a good listener and a good mother. But all these were all about practical things we did. None of us could list anything that connected to our emotions. For me it only proved what I had felt for a long time, we were totally different people.

Staying with Mum gave me the breathing s.p.a.ce I needed to sort out my future for me and the children. Mark moved out to a new flat close to the sea and the children and I moved back into our home. Mark and I continued to share our parental responsibilities, splitting custody of the children. When it came to hospital appointments and special occasions with Hayley we laid our differences on one side and did things together. For the first time in years I was happy. I started to enjoy my own company and the atmosphere in the house improved for everyone.

One day I sat down with Hayley, Louis and Ruby and explained Mummy and Daddy were getting a divorce.

'What's a divorce?' they asked.

'When you get married you get a piece of paper to say you are married,' I explained. 'But when you are divorced that piece of paper is thrown away in the bin and you will be no longer married.'

Chapter 29.

Hayley

All my Friends Have Split Parents

WHEN MUM TOLD ME her and Dad were getting divorced I felt extra sad because I had wanted them to get married in the first place. I always used to say that if two people loved each other they should get married. When they got married I could tell that Mum and Dad loved each other because they were always laughing and kissing and cuddling.

But actually now I think it's better that they are not together any more. I know it sounds a bit weird as most kids want their parents to stay together but now they aren't together they don't argue so much.

Last August before the Progeria Reunion they were so stressed they were arguing more than ever. On the last day of the reunion I was the last one to wake up. Ruby and Louis had already got up and were downstairs playing, so it was just me and Mum left together in our hotel room. Mum said to me, 'Daddy and I are going to split up.' When she told me, I was upset. I worried that I wouldn't see my dad again. I thought, what if Mum gets a horrible boyfriend or my dad gets a bad girlfriend? And that made me worry.

It was Mum's fault that I didn't get to say goodbye to my friends at the reunion. Before I had a chance to say goodbye to everyone Nanna came to pick us up and take us back to her house. When I told Mum I wanted to say goodbye to everyone she said we couldn't because we didn't have time. And I would have to see them again next year. That made me sad. I said, 'What if I don't get the chance to see them again next year?' Then Mum said 'There's things you don't know and don't need to know, but if you did know you would probably understand.' I thought that was weird and didn't make sense.

Ruby and Louis were really upset when Mum and Dad split up. As the oldest in the family I felt I had to look after them. Some nights when we were sleeping at Nanna and Pops' house Louis would cry himself to sleep. I would say to him, 'Everything is going to be all right,' and there was me actually almost crying myself because I was so upset. Ruby didn't know how to take it because she was quite young and it was harder for her to understand. Like if she was at Mum's she would be crying because she wanted Dad and if she was at Dad's she would be crying for Mum. It took a long time before she got used to them not being together.

After the first couple of weeks I started to feel happier because I noticed they were more like friends and they were laughing together again which was really good. I wished to myself that they might get back together. Then I realised 'they are not going to get back together so I have to get used to it' and it started getting better. Dad moved into a flat near the beach and now we stay two days with Mum then three days with Dad and spend the weekend with Mum. Then the next week we swap and stay with Mum in the week and the weekend with Dad. We haven't sorted it properly, but it works.

When we stay with Dad he takes us to the beach and we throw pebbles in the sea, but it's strange going without Mum being there to carry our bags and buy us ice cream. I miss our days out as a family.

I am close to my dad. I remember when I was little he used to carry me around on his shoulders and I liked being able to look over his head. Now I am older I don't like sitting on his shoulders, I'm afraid I will fall back. When I'm with my dad we laugh and joke about silly random stuff.

Dad is good at computer stuff. He runs my website. We are making a new website because the old pink one looks too young for me now that I am 13. The new one is going to be like an old photo booth with lots of pictures up the side. Dad is always taking pictures of me, Ruby and Louis. In fact he's always taking pictures of everything. Like one day there were seagulls living on top of the house opposite his flat and they had babies so he took pictures of them. Or if we are walking on the beach and he sees a really cool pebble he'll take a picture. I'm going to put lots of Dad's pictures up the side of my website.

Dad seems happier these days. He doesn't shout as much as he used to. He used to lose his temper all the time, now the only time he loses his temper is if Ruby and Louis are arguing. But when we are at Dad's house they don't even argue that much any more. It's weird because they argue all the time at Mum's. I don't get it! I think it's because they know that Dad will shout at them but Mum just grounds them. One day when we were staying at Mum's house we were arguing and we made Mum cry. I was quite shocked because she sat on her bed and cried, 'I can't do this on my own any more. You've got to help me and start being good.' Now I do try to be good but with Ruby and Louis it doesn't always work out.

At home Mum seems to treats us differently now she's not with Dad. She takes us out a lot more. Sometimes we go out to McDonald's for dinner which we never used to do when she was married to Dad. Mum is like my best friend. If we are out together and we see someone wearing a ridiculous outfit we say, 'Look at her,' and laugh. Mum is the one that takes me to Boston for my treatment too. We used to go as a family but Mum says the drugs company will only pay for one person to go with me. It's good because Ruby and Louis stay home with Dad and me and Mum get to spend some quality time together without all the arguments.

It's really weird but it's like Mum and Dad were never married and were just friends all along. It would be nice if they had stayed married but most kids I know have split parents so I'm not the only one. My best friend Erin's parents have split up, so I feel normal now.

Chapter 30.

Kerry

Becoming a Teenager

AS HAYLEY'S 13TH BIRTHDAY approached we had to ignore those ominous first warnings that 'children with progeria die of heart disease or strokes at an average age of 13 years' and a.s.sume she would pa.s.s through p.u.b.erty to reach adulthood. She had such a fighting character we believed that she would be the one to beat the statistics and prove all the experts wrong. She had already marked several milestones that we once had never dared to dream of. She was taking the trial drugs to slow down the ageing process with what appeared to be positive results and her arteries and organs were in good shape. And she was attending secondary school just like any other kid an achievement that her close friend Maddie never realised.

In spirit Hayley was already a typical teenager. She loved shopping and sleep-overs. She lived for social network sites Facebook and Twitter and had thousands of virtual friends all over the world that had seen her on TV and wanted to follow her life. And she was besotted by Canadian teen pop star Justin Bieber. Every minute of the day Hayley would be playing his. .h.i.ts Baby or One Less Lonely Girl, she even had life-sized posters on her bedroom wall. Whenever his name was mentioned I would tease her by saying, 'You love him,' and she would blush.

As the actual date of her 13th birthday approached, my initial excitement of her reaching her teens was replaced with a fear. I was afraid to tempt fate by going over the top to mark her birthday, yet I wanted to make it special.

From a very early age we had started a tradition of treating every birthday as if it might be her last. For her first couple of birthday we had the tea parties for close family. For her fourth birthday we took her bowling with her Nanna and Pops and auntie Janie. Her fifth birthday was extra special as it coincided with her Child of Courage Award in London. And for several years after we combined her birthday celebrations with return invitations to the awards ceremonies in London. But as the years pa.s.sed Mark and I became aware of the need to fulfil as many of her childhood dreams as we could. 'She will never have the opportunity to see the world when she's our age, so we have to take her together and share the experience.'

Swimming with dolphins was high on her wish list after watching dolphins perform at one of the marine theme parks when we were on holiday in Florida. The TV programme This Morning had heard about this and for her eighth birthday they arranged to fly the family to Marineland park in the south of France. To add to the surprise the tickets were handed to her by Crocodile Hunter Steve Irwin when they met at the zoo.

On the morning of the trip I was forced to stay home with sickness so Mark took her. As they boarded the plane at Stansted airport, the pilot announced 'We have to wish a happy eighth birthday to a special young lady. Hayley Okines is going to swim with dolphins.' Then Hayley's big blue eyes lit up when a flight attendant appeared with a big pink birthday cake and everyone on board joined in a chorus of Happy Birthday.

At the marine park Hayley was taken to the dolphin pool to live out her dream. She was too frail to risk actually swimming with the dolphins but they gave her a special swimming costume and extra-long waders so that she could walk into the pool and stroke the animals. The trainer showed her how to make them sing and as she waggled her bony fingers in the air they sang happy birthday in their squeaky dolphin voices. The whole trip was filmed and later broadcast on the prime time TV show This Morning, so even though I couldn't be there on the day I was able to relive her dream with her. As we sat down together at home to watch the programme the S Club 7 hit 'Never Had A Dream Come True' was played out as the soundtrack and Hayley turned to me and said, 'This is our song Mum.' I almost cried knowing that she had experienced something that most children of her age could only dream of. To this day, whenever I hear that song, it brings a lump to my throat.

For her ninth birthday we took her to see the pyramids in Egypt. Like many children of that age she was fascinated by the idea of mummies and wanted to know where they lived, so we had promised to take her. On the morning of her birthday the family woke up in a hotel room looking out over the pyramids at Giza. Mark and Louis rode a camel up to the pyramids but I was worried that a camel ride might be too b.u.mpy for Hayley's ageing bones, so I took the girls on a horse and cart ride across the sand dunes. When we arrived at the great pyramid, we found ourselves surrounded by curious Egyptian children. But it wasn't Hayley they were interested in for a change it was Ruby. She was only 18 months old and had a shock of white/blonde hair and blue eyes so dark-skinned Egyptian children were fascinated by her colouring and wanted to take photographs.

When she turned 12 Hayley finally got the opportunity to swim with dolphins when the make-a-wish charity The Starlight Foundation arranged for the family to fly out to Discovery Cove in Florida. As she was older and slightly taller than when she had her previous marine encounter, Hayley was allowed to get in the pool along with Louis. She giggled as she held onto the dolphins' fins and they dragged her though the water.

As she nearer her 13th birthday, the childish thrill of swimming with dolphins was replaced by a new dream meeting her favourite pop star, Justin Bieber. It was a tall order and one that I wasn't sure I would be able to achieve. After all we were talking about one of the biggest pop stars in the world. Even trying to find an email or contact for his management was impossible.

Then a couple of weeks before her birthday I got a phone call from Hawaii.

'Hi, my name is Scooter Braun, Justin Bieber's management company. I hear that your little girl Hayley wants to meet Justin Bieber.'

At first I thought it was a joke and thinking back I was probably rather ruder than I should have been with my non-committal, 'Yeah, that's right,' reply. But I really thought I was being st.i.tched up as part of some sick hoax.

The voice on the other end of the phone continued, 'Justin's in London next week doing some TV and radio promotion. If you can get to London we can fix it up.'