It could be you

By Lindsay Nicholson (THE GUARDIAN, 27/05/06):

With impressive dignity Nicola Smith described the fate that has befallen her family as like a lottery: "For a long time our family have been lucky but that luck just ran out." Nicola and her husband, Scott, recently learned their middle son, Callum, aged six, is suffering from the genetic disease ALD, which attacks the brain and central nervous system and usually results in death within two years of diagnosis. Not only that, but tests on their other two boys - Connor, eight, and Jack, five - showed that they too carry the ALD gene. ALD was brought to greater public awareness by the film Lorenzo's Oil, which told the true story of Augusto Odone (played by Nick Nolte) who developed a special type of oil that delayed the symptoms of his son's ALD. There is however no cure. Barring a miracle, it is unlikely that any of the boys will reach their teens.

In a particularly cruel twist of fate, it would appear that the ALD gene was unwittingly passed on by the boys' mother - ALD only affects males. Even so, specialists have said that the chances of all three children from the one family being affected are literally millions to one against.

But that's the thing about statistics - you can be on the wrong side of them. The chances of winning the big prize in the national lottery are around 14 million to one, against. But people do win: as the early advertising for the lottery had it: "It could be you!"

It could indeed. And by the same ruthless mathematics it could be your family that is afflicted by a rare and terrible disease. And not just once.

I had my own reverse lottery moment in 1997 when I learned that the reason my eight-year-old daughter Eleanor's nasty head cold wouldn't get better was that she was suffering from the same rare form of leukaemia that had killed her father - the Observer journalist John Merritt - just five years earlier.

Illogically, I had believed that his death at the age of 35 had somehow inoculated my family against misfortune. Although I had grieved deeply for him I was not remotely fearful of the same thing happening again. If anything I was fearless, careering through single-parent life with a robust attitude to the children's coughs and colds or minor bumps and bruises - anything that might signal a fatal weakening of the immune system. We rarely went to the doctor. I was unfussy about dirt and germs and bugs even as we travelled extensively in remote parts of the world, protected I thought by my belief that I'd had my share of bad luck. Next time it would be someone else's turn.

Well, it may have been. But it was also my family's turn again.

When the doctors told me - using that phrase "millions to one against" along with others such as: "No other reported cases in the world" and, sadly, gently: "The outlook isn't good" - I started screaming as if drowning out the words would stop them being real.

But you can't scream loud enough or long enough. And if you have a sick child to look after and others to care for - as I did and as Scott and Nicola Smith do - then you really can't indulge in much screaming and self-pity at all.

I know people wonder how on earth you can get through even one day with the horrific knowledge that your child is going to die. Surely it must be more than the human mind can endure. But what choice is there? You can't un-know it. You can't cut out the part of your brain where it is lodged. All you want to do is wrap your arms around your child and protect them as you thought you would do all your life. But you can't - your protection is useless.

And still the world keeps turning and meals have to be prepared and the house has to be cleaned and hospital visits have to be fitted in and a living has to be earned. So you do all those things and try to make life as lovely as possible for your poor sick child and for your other child or children, too. My second daughter, Hope, had been born not long after John died. She was four when Ellie became ill. It was impossible for me as a single parent to care for her as well as Ellie so I had no choice but to send her to live with my parents for the best part of a year. I was only able to leave the hospital to visit once a week and couldn't have any contact at all if Hope had a cough or a cold in case I transmitted it back to Ellie, who was immune-suppressed.

It was agony for the three of us to be apart. And I felt impossibly torn between the differing needs of my children. One so dangerously ill, the other so little and homesick. Hope stopped growing and stopped learning to read. And I believe it is only now - she is 13 - that she is back on track academically. As you struggle on, people say you're being brave, but bravery implies choice and actually you don't have a choice at all.

When an adult receives a terminal diagnosis, all the dreams and hopes they had for the future are shattered and smashed to oblivion. They literally grieve for the future they will never have, running through the whole gamut of grieving emotions from shock and denial through to anger and depression before, hopefully, finally reaching a state of acceptance.

But the sheer busyness of looking after a sick child means that these emotions are more than likely put on hold until after the inevitable has happened. It is very common for parents who have lost a child to separate or divorce later on - even when it seemed to outsiders that their lives were getting back on an even keel - because it is only then that the full force of what has happened hits them. Amid such an upsurge of grief it is fantastically hard for two people to hang on to each other. Some do, but all too often the pain can drive two people who loved each other apart. Although I had to cope alone with Ellie's illness and eventual death there was a little bit of me that was relieved that if John did have to die young then at least he was spared seeing his daughter die.

Another thing that people wonder about is what you should tell the sick child about their condition. In going public with their story Nicola and Scott Smith have obviously had to make it clear to their children how serious their situation is. But then whether a family goes public or not, there is no hiding anything from children anyway. You can't keep it a secret from a child that they are very ill. For a start, they will in all likelihood be being treated alongside other very sick children.

Ellie was a bright little girl and there was no way I could have hidden the truth from her. She, like the others her own age or older on the ward, took a great interest in her illness and discussed her treatment with the consultants. We did talk about death in conversations that I find too painful even now to recall. But we didn't dwell on it. You don't. Children's cancer wards and hospices are very sad places to find yourself in but they are not depressing - quite the reverse. I have many deeply happy memories from that time - of the children racing with drip stands up and down the corridors or cranking the hospital beds up to their full height and making camps underneath them.

One little terror rang the ward phone and used to order takeaway pizza for the whole ward - to be collected by limo. He died not long after Ellie did. I hope they are reunited somewhere, creating many kinds of havoc together.

That time Ellie and I had together was precious to me. Our lives became very focused on the here and now. We lived not merely day to day but minute by minute and with an intensity that brought a very sharp focus to every book we read together or joke we shared.

People who have never been the victim of these medical statistics think that you must spend the whole time asking: "Why me?" But you don't. I never did and it's not a phrase I heard much of in all the months I spent on cancer wards or in the countless meetings I've had with bereaved families since publishing my book Living On The Seabed, which is about grieving. Again, it's not about bravery. People moan: "Why me?" when they get flashed by a speed camera or ruin a new pair of shoes in a muddy puddle. Or I do, anyhow. But when you are caught on the wrong side of the millions to one statistic then actually the thought that seems to run through most people's heads is: "Why not me?"

You suddenly find yourself connected to the universe in a way that most of us manage to dodge for large chunks of time. Even if you don't believe or have gone right off your god who has let you down, you suddenly see what the world's great religions are on about. You suddenly get what Buddha was saying and why Christ died on the cross - that to be human is to suffer. Those tragedies you see on the news don't just happen to other people. They happen to us. It's happening to the Smith family. It happened to me.

And suddenly you get it. You see what beauty there is in the mundane and the ordinary. That to live your life, be in love with your partner, see your children grow up and have children of their own is actually priceless beyond measure. As a stroppy, anarchic young woman I rebelled against the whole nuclear family with 2.4 children thing. Never for a moment dreaming that what I perceived to be bourgeois and stultifyingly dull would become for me a glorious dream I would never able to achieve.

I have heard it said often on cancer wards that the best gift anyone can ever receive is to believe for a short time that you or your family is under sentence of death but then miraculously to be reprieved. Because the understanding and self-knowledge you acquire while peering into the abyss can form the basis of a life that is so much more meaningful and profound - if only you could get the chance to live it.

I certainly hope and pray that the Smith family get their reprieve. If not, then possibly by sharing their experience others, on the happy side of the statistical divide, can find more meaning in their own lives. And for that we should thank them.