Old Before My Time (16 page)

Chapter 28
Kerry
Pressures of Progeria

T
HEY 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 documentary
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 space 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

W
HEN
M
UM 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.