Old Before My Time (18 page)

Chapter 32
Kerry
The Future

A
S
I
HAVE SAID
many times, I believe that Hayley will be the one child to prove the experts wrong, and so far I seem to be right. She has grown into a stroppy teenager with a stinking attitude to match. Like many girls her age she thinks she has a God-given right to leave all her books and clothes strewn across her bedroom and, when I ask her to do something, she constantly mutters under her breath. I should get annoyed with her, but I just feel relief that she is a normal thirteen-year-old. She has even reached puberty, something we were originally told would be unlikely to happen.

Whenever I look at Hayley and see how happy and well-adjusted she is it, I am always reminded of those early days when I wanted to take both our lives. Now I am so glad I never carried out my plan. I would have robbed her of an extraordinary and long life. Hayley would never have made the good friends she has or met all the famous people and other special children.

Having a child with a terminal illness has made me a stronger person. There was a time when I couldn't talk about death without bursting into tears, but now I appreciate life and family. I never take it for granted that my family will always be there and I have learnt to enjoy life and appreciate people, especially my mum, while I can. That's not to say I don't have my moments. There are times when all the children are in school and I am sitting alone in the house and I try to imagine what life would be like without Hayley, not being able to see her sitting on the sofa, or her iPad left on the chair. Then I think of the wise words of a friend who lost her daughter to progeria when she was fifteen: ‘Don't waste your time grieving for Hayley when she is here. Make every day count.' And I soon snap out of the negative thoughts and get on with life.

No matter how much I try to protect Hayley in our daily life, there are some things on the internet that are beyond my control. Just the other day my brother called and I could tell by his voice he was upset.

‘Are you OK?' he asked. ‘Yeah we're all fine,' I replied and immediately I could sense a change in his voice.

‘I just saw on the internet that Hayley had died.' I reassured him that everything was fine but I could tell he had been shaken. When I put the phone down, I Googled Hayley's name and sure enough there were thousands of people writing on their blogs and websites that Hayley had died. It didn't bother me that these rumours were spreading, because I knew they were lies, but it shook my brother who believed what he had read. I sat down and wrote, ‘I am Hayley's mum and Hayley is running around in the garden perfectly fine,' hoping to put an end to the Chinese whisper. When Hayley found out about the rumour she just shrugged her shoulders and said, ‘That's OK, I've read that Justin Bieber has died six times.'

At times I have to monitor the message board on Hayley's website to filter out any nasty comments. Although the internet has been responsible for many good things in Hayley's life, like the meeting with Justin Bieber and the fund-raising for the UK Progeria reunion, it can also bring some ignorant and hurtful comments like, ‘Why has that girl got a bald head?' or ‘That girl looks so weird.' It's quite normal for Hayley to get up to one thousand messages a month, sometimes even more if one of her documentary programmes has been shown somewhere in the world, and the majority of comments on her page are always positive and talk of Hayley being a ‘ray of sunshine' or a ‘true inspiration' but it's hard for me to ignore the nasty ones, which I see as a form of cyber-bullying. Recently a boy posted a message on my Facebook page: ‘Your child looks like an alien and I'm an alien mother from space. I'm going to come down and take my baby.' I wrote back: ‘You pathetic boy, take a good look at yourself in the mirror before you criticise other people.'

The drug trials have been a great help in keeping our hopes alive. We are still waiting for official results from the first FTI trial, which are four years overdue, but so far there is nothing. We continue to allow Hayley and other children to be treated like guinea pigs without having definite answers. But what choice do we have? Without the drugs we all know what the prognosis is. I take heart from the fact that since the trials started I have not heard of one child who has passed away whereas in the past at least one to five children would pass away each year. We're also encouraged by what we see with our own eyes. We don't need doctors to tell us that Hayley is looking healthier. Instead of shrivelling like some of the wizened children we used to see on the internet, she is flourishing. Her facial features have filled out; she has gained weight and has moved up to an age 5 clothing. Her blue eyes sparkle brighter than ever.

The research into a cure is speeding ahead. The second trial is coming to an end and in 2012 we will take part in a third trial. We have not been given any official confirmation of what this trial will be but recently there have been news reports about a drug which the media has called the ‘forever young' drug that could make us all live 10 years longer. I hadn't connected this drug with Hayley's progeria trials until I got a call from a journalist asking what I thought about this new ‘elixir of life' drug Rapamycin. When I checked it out on the Progeria Research Foundation website I discovered that the scientists in Boston had published the findings of their latest experiment. Using the progeria cells and tissues taken from Hayley and some of the other children at earlier trials they had been testing this drug and discovered that it ‘flushed out' the defective protein from the progeria cells making them healthy again and extending their life. The drug had also been given to mice and found that they were living a third longer.

It's incredible to think that Hayley, Michiel and others like them could be paving the way for generations to live longer and healthier lives. But on a purely selfish note I hope it will extend Hayley's own life even further. Like all good things Rapamycin has a downside – there are higher risks. The drug was originally found in bacteria in soil samples from the Easter Island in the 1960s and is currently given to transplant patients to stop them rejecting their donor organs. Some of the side-effects are that it increases cholesterol levels in patients and suppresses their immune system, making them more vulnerable to infections. I am not overly concerned as Hayley has always had a reasonably strong immune system. Apart from a few throat infections when she was a baby, she has never suffered from any infections of bugs like her brother and sister. I think all the drugs she takes actually make her stronger. And we know that her cholesterol level is in check because of our regular check-ups with Dr Whincup, so we are hoping Hayley will be able to withstand any adverse effects. Dr Gordon at the PRF has told us they are waiting for the go-ahead to use a modified version of Rapamycin that has fewer side-effects, so once they get the approval we'll be off to Boston again.

We are still struggling financially, but we manage. Mark is job-hunting and although I am officially Hayley's full-time carer, money is tight. I am always amazed by the generosity and good will of strangers who send cheques to Hayley's Fund. Her website even has a PayPal link, where people who have heard of Hayley's condition through her TV documentaries or various media interviews can make donations if they wish. That money helps to pay for her days out and special holidays. We also have a PO Box and it is quite normal to open it and find anonymous cash gifts or gifts for Hayley. Bandanas are a common item. Initially we would thank everyone personally but over the years it has become impossible to answer all the well-wishers. Since the separation I have resigned as vice-chairman of Hayley's Hope charity but Mark's daughter Charlotte now fills the role. Once again the charity is organising another Progeria Reunion in the UK at the end of October and many of the donations go towards this. Fortunately the Progeria Research Foundation continue to fund the travel for Hayley and me to visit America regularly, but if there ever came a time when they could no longer afford it I would happily take out a bank loan and run up a debt to ensure Hayley gets the best treatment available.

No longer do we live for each day like it was Hayley's last, we are planning ahead. Soon she will be 14 and I want her to have success and ambition. For years she has nagged me to buy her a puppy and in the past I have resisted thinking it would be too boisterous but last year Christmas we bought her a Shih Tzu puppy which she named Angel. Angel follows her everywhere. She is also talking about going to college in Eastbourne or Hastings to study hairdressing and beauty with the idea of opening her own salon. She has also started talking about learning to drive and what car she would like. I have three years to save up for driving lessons because I know in my heart she will get behind the steering wheel and I can't wait to watch her take her first kangaroo jumps along our road in her instructor's car. I also need to give her more freedom. Like all teenage girls, Hayley loves shopping and wants her independence to shop with her friends. I drive her to the shopping centre and wait outside in the car while she and her friends shop or I allow her to go to her friend Erin's house. She always carries her phone on her and knows I am never more than a call away.

My biggest fear is that when her time comes I am not going to be there. I try not to think about it but I can't help myself. It's the last thing on my mind when I go to sleep at night and the first thing I think of when I wake up in the morning. If she is upstairs in her bedroom reading quietly, I shout up the stairs, ‘Are you all right?' and she always replies with a bored, ‘Yes, Mum.' Or if I hear a bang, where she has dropped her book on the floor, I fly up the stairs expecting the worst. I try to hide my fears from her most times.

I truly believe there is life after death and that has helped me through the tough times. I belong to the spiritualist church and one evening as I was leaving the house for a church meeting, Hayley asked, ‘Do you believe in angels and fairies, Mum?'

‘Of course I do. You're my little angel, aren't you?' I replied trying to keep emotion from my voice.

‘I know that Maddie is an angel in heaven. And one day I will be an angel too. When I am an angel I will sit on your back and blow in your ear,' she said.

I take strength from the belief that whatever the future holds, Hayley will always be my angel.

Chapter 33
Hayley
Eighteen for Ever

M
Y ONE BIG WISH
is to have my eighteenth birthday and stay eighteen for ever. I think it would be cool to be eighteen because I will be old enough to drive and I can get a job and have a house.

Me and Erin have our futures all figured out. We are going to own a hair and beauty salon together and live in a really big house. Erin says we should go to New York and live in Grand Central Station but I would like to live in Hawaii because I've heard that it's really hot and sunny there and it seems really nice.

If I can't live in Hawaii then I would like to live near my Nanna. On the way to Nanna's house there's a big wooden house for sale. I don't know how much it is but I want to save up enough money to buy it. I will have a big Jacuzzi bath and flat-screen TVs in every room and Nanna and Pops and Mum and Dad can come and stay with me. Ruby and Louis can come too as long as they promise to be good and not fight. I also want to have another dog to keep my dog Angel company. Maybe a Chihuahua or a Yorkshire terrier because they are small and cute and I can dress them up in bootees. I want a husky too because I love their eyes, they are blue like mine.

When I leave school I want to learn to drive and I want a Mini Cooper or a VW Beetle in pink. When I was out shopping with Mum the other day she pointed to a small car called a Smart car that looked like a bubble and said that's what I should have. I said, ‘No way. It's not cool enough. I want a Mini.' I would like my Mini to be a convertible so I can drive down to the beach in the summer with my friends, roof down and music on my iPod. I am a little bit worried about how I will be able to drive if I sit in the driver's seat and my feet can't reach the pedals. But Mum says I can have a special automatic car with controls on the steering wheel instead of pedals, which would be really cool.

I think that maybe when I grow up I will get married. But I'm not sure if I want to have children. Ruby and Louis have definitely put me off. I don't have a boyfriend and I'm not interested in boys at the moment. Mum says it will have to be someone very special to see beyond my progeria.

The drug trials have been going OK. I have grown a little bit and have put on a bit of weight. Everything looks all right. When the doctors smile it usually means it's good. Next year I and Mum will be going back to Boston for our third drug trial. There is a new drug called Rapamycin which they say cleans the cells of progeria and can make you live longer. They have said it will be another tablet that I can take with the FTI, bisphosphonate and statin to help me live longer. The woman at the Boston Hospital said to Mum she could not tell her the name of the new drug. But then we read stories on the internet that it was called the ‘forever young' drug which they reckon can extend human life for everyone up to 10 years. They are experimenting on progeria children like me. It's good news because if this drug works I could live longer but there is talk that it could be used for everyone. It's been called the ‘elixir of youth' which sounds like something from a space movie. I'm really excited because what we are doing could change things for everyone in the world not just a couple of hundred progeria children which is really cool. In some ways I feel less like a guinea pig because the new drug is not just for us progeria kids but for everyone. But I also feel more like a guinea pig because we are the ones who are going to be taking it to see if it works. They have only tested the drug on mice so far, so I would be the first person to take it which is quite scary. But it's really cool when I think that everyone, even Mum and Dad and Nanna and Pops, could live longer because of a drug I am taking.

Because of the drug trials I feel like I have a future to plan. I feel taller and I'm growing lots of hair. I am also getting bigger; I used to wear age 2–3 clothes before I started the trials now I am wearing age 4–5. The other day Mum bought me new trousers for school and they were age 6.

And to all the doctors and people who said there was no hope for children with progeria and they don't live long I want to say, ‘You're wrong.'