Old Before My Time Part 2

'We found there wasn't much available for families like us and there was no way to definitively test for the disease, no funding for progeria research, and no organisation advocating for children with progeria, so we are going to change that with our foundation. We are on a mission to find the cause in order to work on a treatment and cure,' she promised.

'We use the words 'premature ageing' in quotes because even though there are some aspects of ageing progeria children do have like wrinkled skin, hair loss and heart problems, their brains remain sharp and they are bright, sweet little children,' Dr Gordon said. Like us, the Gordons were on a sharp learning curve and determined to spread their knowledge with others.

Meanwhile life for Hayley went on. We made three-monthly visits to our nearest hospital the Conquest Hospital, Hastings for check-ups with consultant paediatrician Dr Lorna Bray. Although there was no medicine Hayley could take to cure the progeria, there was a c.o.c.ktail of preventative pills and remedies to help her quality of life. One of the main concerns was that children with progeria usually died of heart attacks or strokes, just like old people. As a result our bathroom cabinet started to resemble that of a typical octogenarian. Her daily routine involved a concoction of pills, which we would joke made her rattle. Hayley has always been good at taking tablets, which was fortunate as she needed four doses of vitamin E with her meals to help her heart, cod liver oil for her joints and fluoride for her teeth. We learnt that most progeria children had problems with their teeth due to having underdeveloped facial bones and lower jaws, which meant that their teeth were slow to break through their gums and when they eventually did they were small and irregularly formed. Tooth decay was also a common problem so fluoride would help by strengthening her tooth enamel and making it more resistant to decay. We gave Hayley half of a 1.1mg tablet every day.

Narrowed coronary arteries was another common problem with progeria children and clinical trials had proved that a small daily dose of aspirin, enough to prevent dangerous blood clotting, reduced the risk of strokes and heart attacks. We started out by giving Hayley half of a 75mg tablet every day, but later reduced it to a quarter as we found her skin was bruising easily, one of the common side-effects. Hayley's eating problems which had started in her first months of life continued as she grew older, again we discovered that this was not uncommon in children with progeria, who had tiny stomachs. Throughout her life Hayley has never really enjoyed eating as she complains she gets full quickly. During her early years before bedtime we would give her a bottle of build-up milk called Nutrini which provided all of the nutrients essential for well-being and health. We later discovered something called Pro-Cal, which we would sprinkle into her morning cup of tea to add extra energy, protein and minerals to her diet.

Hayley's favourite item on Dr Bray's prescription was hydrotherapy. She didn't see it as medical it was a chance to put on her pink water wings and matching pink costume and go swimming. From an early age Mark took her to our local hospital for 30-minute sessions in the hydrotherapy pool. It helped Hayley relax and relieved any pain in her elderly joints. The best thing about hydrotherapy was that she didn't ever see it as another 'treatment', it was just a fun day out with her daddy splas.h.i.+ng around in water, yet she would be getting much-needed exercise to stop her arthritic joints from deteriorating. Hayley was a real water baby, she loved the bath and would have been happy to have daily hydrotherapy if she could.

At home Hayley behaved perfectly normally, she had the innocence of a toddler and was totally unaware that she was different to the majority of kids. Hayley loved skipping along the seafront and throwing pebbles into the sea. It was odd to think that although she was young, Hayley was already facing the same health issues as many of the elderly folk who nodded politely as we pa.s.sed them on the prom.

Whenever we took her out in her pushchair, Hayley's big blue smiling eyes and frail features always attracted the attention of strangers who would just stare awkwardly. To counteract this I taught her a trick to deflect the unwanted attention of anyone who stared at her for too long. I wouldn't have minded if these people had spoken to us, asked me why she looked different, I could have educated them with the little knowledge I had about progeria. But to stare was just plain rude.

'Can I do it now, Mum?' Hayley would whisper to me.

'Go on then,' I would reply and she would stick out her tongue causing the 'starer' to quickly look away and move on. It was naughty, I know, but it gave both Hayley and me a wicked sense of satisfaction to watch their embarra.s.sment.

Two months after her diagnosis, Hayley turned two. She had grown very little and was still wearing clothes made to fit a three- to six-month-old baby but Mark and I wanted to make it special and showered her in presents. Like every other toddler at the time she was obsessed by the Teletubbies. It was a daily ritual for her to sit glued to the television as the brightly coloured, podgy characters with TVs in their tummies ran around in Tellytubbyland and said 'Eh-oh'. For her birthday we splashed out and bought her the set of Teletubby toys. There was Tinky Winky the purple one, Dipsy was green, Po was red. But her favourite was Laa-Laa, the yellow one. She carried it around everywhere with her. They were only 10 inches high but at that point the toys were almost as big as Hayley and she would wrestle with them. To transport them around we bought her a pram, shaped like a lady bug, which she could just about manage to hold on to.

From my first conversation with Doreen there had been one thing that stuck in my mind: 'make every minute count'. There was no doubt in my or Mark's minds that Hayley was our special girl, but I wanted to make her life even more extraordinary. 'I want to take Hayley to Disney World,' I said to Mum one morning in January as we were making breakfast.

'Where are you going to find the money to do that?' she challenged. She was right. I had given up my job at the prep school to care for Hayley after she was born, Mark was earning barely more than minimum wage on his delivery van rounds. We had no savings, our old Ford Sierra needed hundreds of pounds to be spent on fixing the rust to get it through its MOT. We had not been able to afford a family holiday the summer after Hayley was born and here I was thinking of jetting off to Florida on a trip that would cost at least 5,000. That kind of money could buy us a nearly new car, one that would fly through its MOT. What was I thinking?

'We could set up a fund, do events, raise money. We could tell the local paper and they can run a story on Hayley. I've read stories about other kids who are sent on dream holidays, why not Hayley?' I explained to Mum, who looked at me as if I had lost leave of any tiny bit of sense I had.

'But what if you can't raise the money? What will you do then? You can't disappoint Hayley, and the girls.'

'Then I'll get a bank loan.' For the first time in months I felt positive. Raising money for Hayley gave me a focus. I was on a mission.

I waited until office hours and rang the news desk at the Bexhill-on-Sea Observer. I told them about Hayley and her one in eight million disease and how her family and friends were raising money to send her to Disney World. They were astounded. That afternoon they sent a reporter and photographer to our house in Bexhill and interviewed Mark and me and took pictures of Hayley.

On Friday January 7 2000, Hayley's story made front page news. 'Why friends want to give little Hayley a Disney treat', the headline read. Below it was a photo of Mark and me holding Hayley between us. The story related how Hayley was one of only three children in the UK with the rare genetic condition progeria which made her age eight times faster than normal children. It explained how her life expectancy was 13 and how Mark and I had set up a trust fund and friends and family were working to raise money to take her to Disney World. The photograph said more than any words could. Hayley looked her cutest, grinning for the camera.

Very soon after Hayley's diagnosis, Mark and I agreed that we wouldn't s.h.i.+eld her from the public gaze. Until that day when the doctor handed us the slip of paper we had never heard of progeria and neither had any of our family and friends. With so few cases in the world, it was safe to say there was a lot of public ignorance about it. Mark and I made a conscious decision to tell the world and that meant appearing in the media.

When the local paper hit the newsstands it opened the floodgates for what has become a lifelong media circus. Hayley's progeria story was picked up by one of the UK's leading broadsheet newspapers: the Daily Telegraph. As soon as the story ran in the Telegraph the frenzy started; my phone was red hot. I had calls from news agencies, women's magazines, television companies, radio stations, all wanting exclusive access to Hayley's amazing story. I called Mark at work panicking about what I should do and, even in the few minutes I was on the phone, six journalists had left messages for me to call them back. While I was on the phone being interviewed by one magazine, there was a knock on the door. I opened it to be handed a telegram. It was from Richard and Judy, who at the time were the brightest stars in daytime TV. Their mid-morning programme was required watching for mums like me. They wanted to whisk us up to London to appear on their show that week. We said yes and within 48 hours we were sitting being interviewed live by the most famous presenters on British TV. It was more than we had hoped for and we took the opportunity to spread the word about progeria. As we sat on the sofa with Richard and Judy one viewer called in to donate a computer having heard us talk about how difficult it was to find out information about progeria. It was incredible, in those days the average home computer cost more than 1,000 and there was a complete stranger offering to give us one.

The money flooded in too. People we had never met would be calling to donate money and gifts.

As word of Hayley's condition spread through newsrooms around the world, we appeared on TV stations from Germany to j.a.pan. We were also contacted by James Routh, a doc.u.mentary film maker who wanted to make a 30-minute programme about Hayley. For almost 12 months James and his film crew followed Hayley, Mark and me as we followed our daily routines at home in Bexhill. At first Hayley was shy when James started asking her questions about progeria, but as the months went by she began to relax. Hayley had turned four when the programme was broadcast on Channel 5 in September 2002 as part of the series of Extraordinary People doc.u.mentaries. t.i.tled 'The Girl Who Is Older Than her Mother' it showed Hayley from her diagnosis to her first day at school. After it was first screened, the reaction to Hayley's story was amazing.

With help from his friend, Mark set about creating a website for Hayley with our new computer. Hayley's Progeria Page was a dedicated s.p.a.ce which gave information about Hayley's condition and doc.u.mented our fund-raising efforts. As technology developed it would it would become a gallery showing photographs of the memorable events in Hayley's life, giving news about her health, featuring links to other progeria information sites and links for online donations to Hayley's Fund.

As a family we also worked hard to boost Hayley's Fund. Any money we were paid for magazine interviews went straight into the pot. Our local paper was also a great support in helping to publicise our efforts. For our first fundraiser Mark's sister and I were photographed at the local Toni and Guy salon where we had our heads shaved for the cause.

The biggest donation came from a group of firemen in Hastings who saw Hayley's story in the local press and rang in offering to run the Hastings Half Marathon to help raise money. Organised by the Hastings Lions Club every March, the marathon was ranked in the top five road races in Britain and attracted around 5,000 runners including some of the world's most famous Kenyan and Ethiopian runners. On the day of the race Hayley, Mark and I stood near the starting line and cheered as the fit firemen, including one dressed in a fluffy purple dinosaur costume, ran the 13.1 mile course. As the runners made their way through the old town then back along the sea front we followed them in a replica steam train, which a group of local rail enthusiasts had kindly offered as our mode of transport for the day. Once again we were touched by the kindness of strangers and the firemen later presented Hayley's fund with a cheque for 10,000 which was more than enough to cover the cost of Hayley's Disney dream trip.

The following September we flew out to Florida with Stacey and Charlotte for the holiday of a lifetime. No one in our circle of friends had ever been to America before. It was all so exotic and exciting. We packed in everything we could in those two weeks, visiting as many theme parks as we could manage. Mark and the girls rode the Jura.s.sic Park roller coaster at the Universal studios while Hayley and I stood at the side waiting for them. With hindsight Hayley, who was just a couple of months short of her third birthday, was too young to take it all in. Even when she came face-to-face with the king of Disney World, Mickey Mouse, in a personal meet and greet, which had been prearranged by one of the UK women's magazines, she was slightly bemused by everything that was happening around her. Yet for us as a family, the trip was a turning point. It gave Mark and me time to talk about how we felt.

Chapter 5.

Kerry

One Big Happy Family

THE MILLENNIUM YEAR TURNED out to be a globe-trotting one for little Hayley. As well as our family holiday to Florida we were also invited to Was.h.i.+ngton DC for our first ever Suns.h.i.+ne Progeria Reunion. Every year The Suns.h.i.+ne Foundation charity for terminally ill children would arrange for all the progeria children in the world to meet up for a week-long holiday. They would pay for Mark and me to attend and take Stacey and Charlotte too. Mark was thrilled at the idea of meeting other parents and advancing his thirst for knowledge. I, on the other hand, couldn't imagine anything worse than a hotel full of terminally-ill children and their depressed parents crying over their short lifespans and mourning the fact there was no cure.

As Mark went about applying for pa.s.sports, converting our spending cash into dollars and organising our travel, I worked myself into such a state about the trip I made myself physically sick. I was not ready to face up to so many other children suffering the same illness as Hayley.

'We can't go all the way to Was.h.i.+ngton DC if I'm going to throw up. It will be no fun for anyone,' I tried convincing Mark that it would be a good idea to stay home. But he pressed ahead and insisted we go shopping for summer clothes. Mark had been doing his online research and discovered Was.h.i.+ngton was expecting temperatures of 90 degrees, so we stocked up on light cotton T-s.h.i.+rts and shorts sets for Hayley and summer dresses for Charlotte and Stacey. It was with great reluctance that I helped pack our suitcases on the night before our departure. If Mark's girls hadn't been so excited about going on their first American adventure, I would have gladly cancelled the trip and stayed at home. But I couldn't let them down.

When we arrived at the Marriott Renaissance Hotel in Was.h.i.+ngton after a 16-hour journey, it was nothing like I could ever have expected. On checking into our room, we went down to the poolside area to meet the other families. As we got closer to the pool, we could hear the laughter and splashes of dozens of children having fun. Walking through the gla.s.s doors that led out onto the pool area, I felt a lump in my throat. It was like a saucepan full of boiled eggs dozens of bald-headed children bobbing around in the water without a care in the world, all inhibitions thrown to the warm Was.h.i.+ngton wind. It was Hayley's cue for play. 'Can I go swimming, Mum?' she asked. I took her and the girls back to our room to change into their costumes, while Mark stayed at the pool making new friends.

Hayley was only three and was too young to take in the importance of the gathering but for Mark and me, it felt like we had found our true family. There were 27 of the 40 known cases in the world in that hotel, some were playing around in the water, others were too frail to play and sat in their wheelchairs at the water's edge, smiling in the suns.h.i.+ne. It finally hit me how fortunate we were to see Hayley running and playing.

Over the seven days Mark and I made valuable friends.h.i.+ps with families from America and Europe.

We met Doreen, our friend from the UK who had first told us about the reunion, in turn she introduced us to a Dutch couple called Marjet and Klaus who ran the Progeria Family Circle linking families across Europe. Their son Ben had pa.s.sed away five years earlier but they devoted their time to supporting and caring for other families. We also met our American 'phone friends' Leslie and Scott, who had already been so vital in helping us to understand Hayley's condition. For the first time we got to know older progeria children. There was 13-year-old Joscha from Germany and his best friend Mihailo from Belgrade. Both boys were quick-witted and funny to be around. Then there was Sarah, a seven-year-old Swiss girl, who could have pa.s.sed for Hayley's older sister. The one thing that all these children had in common, apart from their illness and the similar bird-like features, was that they brought suns.h.i.+ne into the lives of everyone who knew them, including Mark and myself.

At our first reunion we met up with two other families from the UK whose children also suffered from Hutchinson-Gilford Progeria. There was a young boy from Leeds whose progeria was quite advanced and was very poorly, and a five-year-old girl called Maddie, whose family also lived in England. She immediately took a s.h.i.+ne to Hayley. Looking at them they could even have been sisters. Maddie was almost three years older than Hayley or 24 progeria years but they immediately struck up what would become a close and life-long friends.h.i.+p. Although we had spoken to Maddie's parents on the phone and we had mutual friends, we had never met as a family. We immediately bonded with our shared experience of progeria, helped along by a few tequila shots at the hotel bar.

For the children the reunion was just one never-ending play day. Everywhere they looked there was something for them to do. Face painting, things to make, tables laid out for drawing, colouring and cutting out shapes, ball games in the pool. There was a whole community atmosphere with teams of volunteers from the neighbourhood helping to ensure that there was never a moment when the children could be bored. We were taken out on day trips to theme parks and taken out for ribs and burgers at the local steak house.

An important part of the reunion was the question and answer session with doctors and experts. While the children were being cared for by some of the volunteers, the parents had the chance to sit around and discuss new discoveries and share the wealth of their own experience. It was at these sessions we first found out about the build-up drink, Nutrini, which some of the other children were taking. We also came to understand the different types of progeria. Hutchinson-Gilford, which Hayley had been diagnosed with, was the most common and was what the Progeria Research Foundation called 'cla.s.sic' progeria. There was another type of progeria called Werner's Syndrome or 'adult onset progeria', which starts after p.u.b.erty and affects growth in children in their late teens and adults in their twenties. The ageing symptoms are similar but the young people with Werner's Syndrome had longer life expectancies. Bloom's Syndrome we discovered is a variation which was first thought to affect Eastern-European Jews but has since been found in other ethnic groups including Indian, Ethiopian, Latin American, French-Canadian, j.a.panese, and Turkish people. Their average life expectancy is 35 and they are sensitive to sunlight and p.r.o.ne to leukaemia.

Our first experience of the reunion had been a real education. But when the time came to say goodbye there was added poignancy. The children were not just saying 'so long' to their new friends, there was an air of uncertainty for the parents. We did not know which children would be playing in the pool next time we met up. This. .h.i.t home the following year when we flew out to Philadelphia for our second reunion and Joscha and Mihailo were missing. In the intervening twelve months both boys had pa.s.sed away. They had both been thirteen when we first met them and it shocked Mark and me to realise that in ten years time it could be Hayley who would be missing from the reunion. Thankfully Hayley was too young to notice and although saddened by the news we were reminded of a poem which Marjet of the Progeria Family Circle would send to bereaved parents.

Dying only means moving into a nicer house.

We have only gone into the next room.

We still are what we have always been.

We aren't far away.

We are only on the other side of the pathway.

The following year there was one more face missing at the reunion at the Marriott Renaissance Hotel in Orlando, Florida. Mine. I had given birth to our son Louis just two days earlier and as much as I didn't want to miss out on the fun in Florida, there was no way I could drag a tiny baby across the Atlantic.

As I helped Hayley pack her tiny shorts and vests and sundresses into her miniature pink trolley suitcase I felt a pang of jealousy. 'Night, night, see you in America,' Hayley said to her doll as I helped her close the lid. That night, tucked up in bed in her Winnie the Pooh sleepsuit, Hayley hardly slept with the excitement of knowing that the next day she would meet up with her best friend Maddie and all the other children.

When the plane touched down in Orlando, Mark called to say they were safe and the heavens had opened. I could hear the rain beating down in the background as Hayley told me she was missing me. It was the only reunion where it rained all week, so it made me feel less jealous knowing I had chosen the wettest year to stay at home. Throughout the week, Mark and Hayley rang twice a day, Hayley wanted to say h.e.l.lo to her new brother. She was more than 4,000 miles away from home, surrounded by friends, but she still had thoughts for little Louis.

For my next update, Mark called to say that Hayley had been a media star that day. As usual the local press turned up to interview the children. Journalists were fascinated by progeria children and with 32 families, three-quarters of the known cases in the world, on their doorstep it was too good a story to miss.

'The local TV station wanted to talk to Hayley, but she went all shy on them,' Mark said.

'You would have laughed if you'd seen her, Kerry. She was sitting on my lap wrapped in a towel with this pair of enormous sungla.s.ses on her head like she was some superstar diva. When the reporter put the microphone up to her face and asked her if she had made friends, I think she was a bit scared as she just went quiet. The microphone was as big as her, so that may have frightened her but she went all camera-shy and just nodded. I've never seen her so quiet.' When I saw the video later I could see why they chose her for their interview, I may have been biased as her mother, but she did look super cute.

The following day there was bad news from Orlando. One of the progeria children had died in his sleep at the reunion. In the few years we had been attending, Greg Mercer from Georgia, USA, had been the VIP of the events. At 32 he was the oldest known case and had lived almost three times his life expectancy. He had a different form of progeria and had been to every one of the reunions since they started 20 years ago. With his deep southern accent he charmed the parents and volunteers alike. He had seen many friends die of premature old age, and he outlived them all. He was like the wise old man of the Progeria Reunion.

'We were queuing up for breakfast this morning when one of the parents told me Greg had been rushed to hospital in the night and had died,' Mark said. 'It was a h.e.l.l of a shock.'

'How was Hayley?' was my immediate reaction. Suddenly I wanted to be by her side and to protect her.

'I don't think it has really affected her. Luckily she's too young to realise what's happened, but it's. .h.i.t some of the parents hard. One of the mothers said we should all go home as it wouldn't be right to stay here in such sad times. But I and some of the other parents said it would be wrong to end it all so quickly when the other children were having such a good time. The little ones, like Hayley, were too young to understand why we were going home and it would just upset them more. Greg's family told us we should all carry on as it was what Greg would have wanted. So we've decided that, out of respect to Greg, we'll honour his memory by keeping the reunion alive.'

'And how are you?' I asked Mark.

'I feel so bad for Greg's parents. But it has made me realise how precious life is and we really have to make the most of it while it lasts as you never know what's around the corner. Some of families who were close to Greg and his parents have been having a rough time. They are probably wondering if they will be next. I've been keeping my eye on the kids, when I see one of the parents going through a bad patch, I've gone looking for their children and called them into the pool for a game of football. I couldn't bear to see them watching their parents in such a state.

'I tell you one thing, Kerry, it makes me so angry to see how unfair this disease is. These kids have done nothing to deserve it, I hope to G.o.d someone can find a cure for them.'

Another year at the reunion we met a family from Belgium who had us to thank for the diagnosis of progeria in their son. Every progeria story is heart-breaking but I felt for Wim and G.o.dlieve Vandeweert more than anyone because their son Michiel was so similar to Hayley in age and development. Michiel was a year younger than Hayley and, like Hayley, when he was a toddler his lack of growth, thin dry skin and loss of hair had been dismissed by their doctors as 'nothing to worry about'. Fearing the condition was hereditary, Wim had a vasectomy but after seeing Hayley's first doc.u.mentary alarm bells rang. Looking at Hayley was like looking at their own child, they told us. The premature ageing, the hair loss, the stiff joints, were all identical. Armed with this information, they went back to their doctor and asked if it could be progeria. After numerous tests, it was confirmed. And while they were gutted for their son, it gave them more hope for growing their family. With the tiny a one in 8 million chance of it happening again, Wim had his vasectomy reversed and in 2005 they had a baby girl, Amber. Doctors told the family that, unlike Michiel, Amber was fine. Her skin was healthy, unlike Michiel's which was translucent. Her hair was thicker than her brother's and she was a healthy weight. But within weeks of her birth Amber fell ill and, despite constant rea.s.surance from doctors, Wim and his wife asked for her to be tested with progeria. They were devastated when the results came back as positive. After more tests it was discovered that Wim's wife carried the defective gene and their chances of having another progeria child are now 1 in 2.

'I have never won the lottery but we have had progeria twice. That is bad luck,' Wim said. I was so impressed by the family's positivity in the face of such adversity that we became good friends.

Chapter 6.

Kerry

Starting School

HAYLEY'S FIRST DAY AT Sidley Primary School was something I had never dared to dream of. When we were first told that Hayley's progeria was terminal, I had rather naively a.s.sumed that Hayley would not live long enough to reach school age, yet there I was on September 4 2001 ironing her tiny uniform and making sandwiches for her big day.

As I laid out her freshly pressed blue and white checked pinafore dress and waited for her to wake up, I suddenly felt a lump in my throat. I was scared for her. For the first four years of her life Mark and I had been by her side every second of every waking hour. We made her feel like the most special person in the world because she was, in our world. We had held her hand and told her what a brave girls she was being when she cried as doctors dug needles in her looking for blood. We had lifted her up to reach the handle of the back door when she wanted to go outside to play. We had s.h.i.+elded her from the stares of the ignorant and the inquisitive. Now we had to hand her over to the school, and although I was sure that the head and the other teachers would do their best to protect her from bullying and educate the other children, I was still nervous about handing over responsibility.

Three months before the start of term we had attended an open day where Hayley met her new teacher Mrs Haines and some of the other children who would be in her cla.s.s for the new term. It had all been a big adventure as she played shop with the other children and painted pictures. I remember how at the end of the day she had run to meet Mark and me waving a paper plate covered with glue and strands of black wool and crayoned eyes and mouth. 'This is Stacey,' she announced handing her artwork to Mark. 'She's been ever so good,' Mrs Haines rea.s.sured us.

In the months that had pa.s.sed between the open day and the start of new term Hayley had already aged the equivalent of two years but she hadn't grown a centimetre. Shopping for her school uniform was a challenge. How many two-year-olds need navy school cardigans? Most of the uniforms Mark and I could find started at age 45 and they were swimming on her. The best we could find was a white polo s.h.i.+rt for a four-year-old. When we tried it on her, it reached down to her knees.

'I can tuck it in, Mummy,' she said stretching out her arms as the short sleeves reached past her tiny little elbows. She looked like she was playing dress up in her big sister Stacey's clothes. Finding a dress to fit was just as difficult. Again we had to buy the smallest we could find and even though sewing was not my strong point I turned up a large hem so the skirt wouldn't drag on the floor. Buying shoes to fit was equally challenging. Up until now she had trainers and little sandals as her feet were narrower than most children's. Finding black patent leather shoes to meet the school regulations was hard work.

'You look like a moon man,' Mark joked with her as she walked around the shop in boots that were way too big. When the shop a.s.sistant measured her feet, they were size 3 with a narrow e fitting. Eventually we found a pair of tiny black leather shoes with a T-bar which she declared were 'a gorgeous fit' as she stomped around the shop like a supermodel showing off her new footwear. 'Gorgeous! Gorgeous! Gorgeous!' she announced to the amus.e.m.e.nt of the shop a.s.sistant and other customers.

To prepare Hayley for school we had to explain to her why the progeria made her look different to other kids.

'When I get older and lose my progeria, will I have hair like Stacey?' she asked. I cuddled her and said, 'I hope so,' and crossed my fingers tightly as I said it. How could I tell her the truth that she will never grow old or grow hair unless doctors come up with a miracle drug?

The morning of her first day at school, Hayley was full of beans. She skipped into the kitchen in her fluffy pink dressing gown. I made her favourite breakfast: scrambled egg. Then she washed and brushed her teeth and I helped her get dressed in her new uniform. As I b.u.t.toned up her blouse, hitched up her skirt and helped her buckle her shoes, I felt so proud. For the finis.h.i.+ng touch, I tied a navy blue bandana to match her cardigan around her head. She had lost all her hair when she was three and it had never really bothered her. But starting school with other, ordinary kids had made her more self-conscious and she refused to go outside without covering her bald head. She had started wearing pretty pink bonnets and baseball caps when we went out. But for school I had bought her a selection of her trademark bandanas.

In the kitchen her Powder Puff Girls lunch box was waiting, packed with a chocolate spread sandwich, a packet of crisps and her favourite Pink Panther wafer. I hoped it would be enough to maintain her energy levels throughout the day. With Louis in the pushchair, Mark and I walked her to school, followed by a crew of TV cameramen who were still making the Channel 5 doc.u.mentary. Being so young Hayley thought it was perfectly normal to have an entourage following you around.

At the school door Mrs Haines met us and we waved goodbye. I tried hard not to cry. There were other first-time mums in the yard, nervous for their children's big day, but I had more reason to be afraid. Hayley already had the body of a 32-year-old. One little b.u.mp and she could break her arm.

At regular intervals throughout her primary school life Mark and I met with Hayley's teacher for progress reports and to share any worries. We were concerned that she might be falling behind in her school work due to the number of days off for hospital appointments. We also wanted to ensure that she wasn't getting bullied. She was such a cheerful child, I thought I would be able to spot the signs if she was being called names. Her personality and childhood innocence had protected her so far but her insistence on covering her head in public made me think another child had said something to her.

Mrs Haines told us that she was not lagging behind in her school work. 'She does have more time off than most of the other children but she works hard to catch up. And she is popular with the other children because of her sunny nature: she brings out the best in the others.'

'Has she been bullied because of her bald head?' I asked. 'Having no hair has never seemed to bother her until she started school. Now she refuses to go out without her bandana? Have any of the other children said anything to her?'

Mrs Haines told us there had been a 'conversation' with some of the other children who asked her why Hayley doesn't have hair. They wanted to know if she will ever grow hair. She then explained how the cla.s.s had been given a lesson about differences, where she explained how we are all different: some of us have brown hair, some of us have blue eyes, some of us are tall, Hayley has no hair and we have no choice over these matters.

I was satisfied that the school would do everything they could to protect Hayley from cruel name-calling. And her academic progress was good. I just wished that there was something that could be done help her progeria. It frustrated me that no matter how hard we tried to make Hayley's life better and spread the word about her condition, there was nothing we could do to further medical advances.

'There ain't no cure for old age,' Mark would say in his philosophical way. And he was right up to a point. He said that it would be a waste of money to spend millions of pounds in research for a condition that affects so few people when there are millions of people dying of cancer or AIDS every year. But that was no comfort to me. Some days when Hayley complained of joint pains we would be annoyed and ask ourselves, 'Why more can't be done to research this terrible illness?'

While Hayley was learning her ABC and numbers at school, Mark and I were learning more about the progerin protein which causes progeria. We heard about the Geno Project, where scientists were trying to find the bad gene that causes progeria. They had already made progress by cloning the progeria gene which they had in a database alongside all the other genes that make up human beings, but they hadn't yet worked out how to find it. They reckoned it was a lot like hunting a serial killer. They knew the killer was out there but they didn't know what it looked like. We lived in hope that with humans living longer and more people reaching old age, these scientists would find a cure while Hayley was still at primary school.