Old Before My Time Part 5

Chapter 14.

Kerry

Hayley Okines, Friend of the Stars

IN MANY WAYS HAYLEY is just like many other girls of her age she loves playing with make-up and dancing around her bedroom to her favourite pop song of the moment. But unlike other teenage girls Hayley's progeria has paved the way for her to meet many of the stars she has plastered over her bedroom wall.

Her life in the media spotlight had brought many extraordinary twists to our lives. I remember having one of the first of many 'pinch-me, I'm dreaming' moments when we discovered Hayley had been nominated for an award at the Woman's Own Children of Courage Awards in 2002. The awards were being held at Westminster Abbey in London on Wednesday, December 11. HRH Prince Charles would be presenting 10 children with medals for their bravery. Hayley was being honoured for her outstanding courage having been nominated by readers of Woman's Own magazine, who had followed her life through magazine features.

I dressed Hayley in her best lilac satin dress, with matching purple ankle socks, pale lilac cardigan and black shoes. In her own words she looked 'gorgeous'. Before the awards the families of all the children were taken to meet the Prime Minister Tony Blair at 10 Downing Street.

Hayley struck up a friendship with the Prime Minister's son Leo, who was only two, but already the same size as Hayley. They spent the entire time sitting together on a window sill singing nursery rhymes, oblivious to the excitement that was going on around them.

On the coach from Downing Street to Westminster Abbey, the children and their parents were given a reminder of what to expect. 'There will be lots of celebrities there, so get your autograph books ready,' the host said over the coach speaker system. 'And when you meet Prince Charles remember to say please and thank you. But don't ask him for his autograph because he doesn't give autographs,' he warned Walking into the Abbey, we felt like royalty. We couldn't believe our eyes. Everywhere we looked there was someone we recognised from TV. Burly EastEnders actor Ross Kemp swept Hayley off her feet and gave her a bear hug, pop star Billie Piper gave her a kiss and veteran comedian Sir Norman Wisdom tickled her bald head. When actress Suranne Jones laid eyes on Hayley's cheery face, she was so overcome with emotion she started to cry. As we sat through the ceremony we heard many poignant and emotional stories of brave and unselfish children. One sixteen-year-old boy was picking up an award for his younger brother who had been killed by a falling tree while pushing him to safety. There was a twelve-year-old girl who had saved a drowning toddler, an eleven-year-old girl who saved her sister's life when she was impaled on a metal spike and a seven-year-old girl who had been born with hydrocephalus and spina bifida and had undergone eight major operations At five, Hayley was the youngest of the children and also the smallest, so she seemed to get more than her fair share of attention.

When the time came to hand out the awards Prince Charles knelt down to hang the red-ribboned medal around Hayley's neck. And at that point she broke the cardinal rule and asked, 'Can I have your autograph, please?' Her cheeky smile won over the royal guest who replied, 'Only if I can have yours.' Hayley scribbled her name on a piece of paper and gave it to the future king of England and he returned the favour. Hayley's audacity earned her a spot on the national News at Ten that night.

After the awards we made friends with some of the celebrities who volunteered to help us to raise money for Hayley's Progeria Fund. When he was appearing in theatre in neighbouring Brighton, Ross Kemp volunteered to come down to Bexhill to launch a balloon race to raise funds for Hayley's fund. As a winner of an award Hayley was also invited back to subsequent awards ceremonies where she got to meet even more stars. On one occasion she met Kimberley and Nicola from the band Girls Aloud, who invited her backstage at one of their concerts. When she got to the concert, a woman with a broad Geordie accent said to Hayley, 'Haven't I seen you on TV?' We turned around and it was Cheryl Cole. I was gobsmacked to think that a star as big as Cheryl had recognised her.

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 b.u.m 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 pa.s.sed 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 pet.i.te 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 doc.u.mentary film maker, who was shadowing our family making the second doc.u.mentary The Girl Who Is Older Than Her Grandmother, knew Mark's pa.s.sion 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 b.u.t.terflies 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 doc.u.mentaries and was moved to write a song to raise 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, 'h.e.l.lo, 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, 'h.e.l.lo'.

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 pa.s.sed 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. .h.i.t 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 p.r.o.nounced the same, was the name of a Suss.e.x 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 expected 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 h.e.l.lo,' 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 s.p.a.ce was at a premium. When Louis was old enough to sleep in his own bed, he moved in to share Hayley's pink bedroom.

Life continued as the perfect balanced family, then I missed another period. Once again my timing was all wrong. Louis was three, Mark was an out-of-work house-husband and I had gone back to college to study a course in reflexology and holistic medicine. Mark and I hadn't planned on having more children although deep in my heart I always hoped I would have more just not at that particular time of my life when I was learning new skills with the intention of getting some part-time work as soon as Louis was old enough to start school to bring in some extra money. Again Mark was not happy (there was a pattern emerging here!) and we decided that after Ruby was born we wouldn't take any more risks and Mark booked to have a vasectomy.

When I told Hayley we would be having another baby in the house, she was excited but a bit concerned where the new addition would sleep. When I told her, 'We're moving to a new house where you can have a bedroom each,' she was happy enough. 'I hope it's a girl so we can play together,' she said. Sure enough when the scan showed I was having another girl, Hayley was over the moon and planned all the games she would play with her new sister. We decided we would call her Katy. 'I can call her Kit Kat,' Hayley said. But Mark hated the name and we reached a stalemate. Hayley and I were convinced we would win Mark around but he refused to budge. Then a couple of weeks before I went into labour we were all watching the TV soap EastEnders when the character Ruby walked onto Albert Square.

'What about Ruby?' said Mark. So Ruby it was.

Throughout the pregnancy Hayley loved touching and kissing my swollen tummy and would often sit beside me and sing nursery rhymes into my belly to feel little Ruby moving. Hayley had also started learning to play the violin in school and was convinced that Ruby would like to listen to her practising. Whenever she played Ruby would move inside me, but I think she was just trying to get away from the screeching noise of Hayley's beginner's violin scales. Carrying Ruby for nine months was bliss. I knew that it would be the last time I would be pregnant, given our belated family planning scheme, and I wanted to enjoy every last moment from the late-night craving for chocolate Minstrels to the healthy glow of my skin that made my friends and family say, 'You look well.' When I was carrying Louis, I ballooned. I was so huge I could hardly walk in the last few weeks and I could just about manage to waddle to the bathroom. But Ruby was a joy, I was much smaller and I hardly felt like I was pregnant.

I felt the healthiest I had been in my life.

On June 2 2005, after an eight-hour labour, Ruby was born and turned out to be the biggest of all our babies weighing 8lb 2oz. She was delivered by the same midwife who had brought Hayley into the world eight years earlier and after all that time she still remembered Hayley's big blue eyes once seen never forgotten, I always say. Ruby had dark eyes and a thick layer of hair. Like Louis she was a healthy baby. Immediately our family life changed to accommodate the new addition. We moved into a larger four-bedroom council house across the road from where we lived, Stacey moved out to live with her mother and Hayley and Louis had their own bedrooms. We had been busy decorating our new home and for the first time we had s.p.a.ce for a proper nursery. Once again Hayley proved she was would make a great mum, she would sit on the sofa with Ruby on her lap singing nursery rhymes and Kylie songs as she gently rocked her to sleep.

As Louis and Ruby grew up and became more independent, the fights started between Hayley and her brother and sister. When Ruby started to get a mind of her own, she learnt how to annoy her older siblings. It was quite common for Ruby or Louis to come crying to me because Hayley had hurt them. As her younger brother and sister started to tower over her, Hayley learnt that the only way she could hurt them was to pinch their cheeks. She couldn't lash out and punch or kick like they could because she would just fall over and end up hurting herself, so the cheek-pinch became her effective method of fighting back. When fights erupted, quite often out of nothing more than Ruby's refusal to let Hayley be the boss or Louis not allowing one of his sisters to play on his Xbox games console, I would stand back and let them get on with it, knowing it would eventually end in tears. Even now there are some nights when Ruby will creep into my bedroom while Hayley and Louis are asleep, and start to cry. 'I've been nasty to Hayley, what if something bad happens to her.' It's a terrible thing for a six-year-old to carry that weight of responsibility. 'That's why you should always be nice to one another,' I tell her and the message sinks in for a day of so. The next morning Ruby apologises to Hayley and gives her a big hug and everything is fine, until the next time ...

As parents Mark and I have had to maintain the balance to share our time and affection between the children. Both Ruby and Louis know that Hayley's progeria makes her different from them and they seem to accept it. I have been known to buy Hayley extra little presents when she has to have difficult treatment and they understand that this comes from her own moneybox which is topped up from her publicity fees, and although young they seem to understand this. For me the hardest part is saying no to Hayley when she wants to go shopping for new clothes or gadgets. In my heart I want to give her everything she asks for because I know that I will not have the chance when she is older. But sometimes I have to say no as there's a fine line between being a special child and a spoilt brat.

Hayley and Ruby would often sit together and watch Disney DVDs, they loved the sugar candy pinkness and happy-ever-after of cla.s.sics like Beauty and the Beast and Cinderella. I don't know whether this gave Hayley any ideas, but one day she turned to Mark and I as we were cuddling on the sofa in one of our rarer loving moments , and said, 'If two people love each other, they should get married.' Mark and I were slightly shocked. The idea of marriage had never been a priority to us. Sure when I was a kid, like Hayley, I had dreamed of a fairytale wedding with a big church and a crowd of hundreds watching me walk down the aisle to the Wedding March. But the older I got I realised that fairytales are just that and our priority as parents was to take care of our children and find a cure for Hayley's condition. A wedding seemed like an unnecessary expense. But Hayley had planted the seed of the idea. In her mind she wanted her 'big day' and the only way she was likely to do that was through Mark and me.

The more I thought about it, marriage seemed to make sense. Hayley and Louis were both at an age where having parents with different surnames, although not uncommon, needed some explanation. Louis and Hayley were often puzzled when their teachers gave them letters addressed to 'Mrs b.u.t.ton'. So Mark and I set a date and a place July 29 2006 at Hastings Register Office and I started arranging our big day with Hayley as my a.s.sistant wedding planner. Hayley had it all mapped out in her head. She and Ruby would be bridesmaids and they would be wearing pink, of course. There would be a pink cravat for Daddy, his best man and Louis, the pageboy.

The wedding itself was going to have to be a low-key affair, we didn't have thousands of pounds to waste on a lavish party. I didn't even have a spare couple of hundred pounds to buy a wedding dress. Fortunately a local wedding dress shop heard about the plans and offered to donate Hayley a bridesmaid's dress for her big day. They also allowed me to buy my dress and Ruby's at cost price. So, before 'austerity weddings' became fashionable, Mark and I had our own budget-busting ceremony for just 25 close family and friends. I chose a two-piece skirt and bustiere top in ivory silk made in Paris. Hayley got her wishes a beautiful cerise pink chiffon dress, which matched the pink crystals on my dress but it had to be altered several times before it fitted her tiny frame. On the morning of the wedding Hayley took charge helping her brother and sister into their outfits. Louis was our page boy and wore a suit with a pink cravat to match his Daddy's and little Ruby wore a baby pink dress. After the ceremony Hayley paraded around wearing my veil saying, 'Look at me, Mum. I'm the bride.' It broke my heart to see her and think she would never grow up to have a wedding of her own.

After the ceremony my mum took the kids and my brother and sister for a post-wedding lunch at a local pub while a limo arrived to drive Mark and I to our honeymoon destination a rave festival. We headed to Warwickshire to spend our first night as husband and wife at the Global Gathering festival, doing what we loved most dancing with a group of 10 cousins and friends. Most couples go for a slow smooch first dance, but ours was a full-on, glowsticks-in-the-air rave that lasted until dawn with 45,000 other people. Not the typical wedding, some might say, but ours wasn't a typical romance.