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 Japan. We were also contacted by James Routh, a documentary 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 documentaries. Titled ‘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 space which gave information about Hayley’s condition and documented 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 Jurassic 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 Washington DC for our first ever Sunshine Progeria Reunion. Every year The Sunshine 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 passports, 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 Washington 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 Washington was expecting temperatures of 90 degrees, so we stocked up on light cotton T-shirts 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 Washington 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 glass 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 Washington 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 sunshine. It finally hit me how fortunate we were to see Hayley running and playing.
Over the seven days Mark and I made valuable friendships 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 passed 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 passed 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 sunshine 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 shine 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 friendship. 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 ‘classic’ progeria. There was another type of progeria called Werner’s Syndrome or ‘adult onset progeria’, which starts after puberty 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, Japanese, and Turkish people. Their average life expectancy is 35 and they are sensitive to sunlight and prone 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 hit 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 passed 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 hello 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 sunglasses 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 hell 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 hit 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 God 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 Godlieve 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 documentary 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 reassurance 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 assumed 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 shielded 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.
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