Ian Birrell: Iona and Ivan – a tale of two children and two families

The deputy editor of <i>The Independent</i>, whose daughter is profoundly disabled, offers a unique insight into the difficulties facing both his own family and the Camerons

(David Sandison)

I awoke to the sound of my daughter, Iona, screaming yesterday morning, shortly after six. First the agonised screams, then coughing and spluttering and the sound of choking. Then silence. Downstairs, Iona was thrashing around in her bed, her limbs flailing, her eyes flickering and rolling in her head. My wife held her tight to stop her banging her arms and legs against the wall, and watched as the waves of violent spasms subsided.

The seconds ticked by as Iona lay there motionless, her heart hammering away, her breathing shallow. Fortunately, it was "only" a five-minute seizure. Her breathing returned to normal quite quickly, so there was no need for oxygen or emergency medication.

This is a normal start to a day in our household. These seizures come at any time of day or night. They vary in style, in severity and in duration. However many times you have seen them, they are agony to watch. Each fit damages her brain, slowly stripping away her ability to smile, to eat, to hold our hands. The only certainty is that each one could be her last. For the majority of people suffering epilepsy, the condition is treated successfully with increasingly sophisticated drugs. For a minority, those with more complex conditions such as Iona, the drugs fail to control the seizures. At worst, people suffer fatal breathing difficulties or Sudden Unexpected Death in Epilepsy, an inexplicable occurrence that causes 500 deaths a year in this country.

This is the awful shadow that hangs over our lives. Iona is now 15 years old, and has been blind, unable to walk or talk and in need of 24-hour care since birth. After a healthy pregnancy, she arrived quickly, a perfect second child that made our family complete. Six weeks later, the fits began and our lives changed for ever.

There has never been a diagnosis. At first the doctors were certain we would find evidence of brain damage, then they suspected genetic or metabolic causes. There were endless scans and batteries of tests in the early days. She has weeks when she is healthy, full of bounce and smiles, then months in decline. Several times, the downturn has been so severe that we have had to prepare for her death, watching and hoping as she lay in bed, her skin grey, her eyes sunken, a frail bundle of bones. Equally, we know that she could be taken from us one night when in apparent good health.

If she has to go, I hope that she goes after a day full of laughter and joy with her family, when she has enjoyed good food, a windy walk in the park and lots of cuddles, rather than after one of those awful dark, drawn-out declines. Sadly, this looks less and less likely.

Ivan Cameron had been in good health recently. He had started smiling again in the summer, which delighted his parents. He had enjoyed a good Christmas, a season that so often for both Ivan and Iona was a time of colds and infections and hospital. And just a week ago, David Cameron was telling me how well Ivan was and how happy they were with this period of good health. So the sudden turn of events yesterday morning must be all the more devastating.

We met soon after David became an MP, and bonded over a lunch that began with the usual Westminster gossip and ended as an intense discussion of disability and parenting. Over the years, we have swapped notes, discussed schools and doctors, and talked about how our disabled children have impacted on our lives and our beliefs. We have been thrust into the hidden world of disability, a land shockingly ignored by the rest of society. This has opened our eyes to the terrible failures of public services, the paucity of respite care, the endless battles against bureaucracy – and also to the immense service performed by an army of poorly paid carers and under-appreciated health workers. It has changed my views on the health service and hardened my support for immigrants, the unsung heroes of the caring world. It has increased his determination to support carers and health workers, sort out special schooling and hand power back to the users of public services rather than the providers.

I can still remember every second of the day we learnt Iona was disabled. The look on the doctor's face as our tiny baby's body stiffened in a fit, the words spoken by another doctor as he broke the news that she was profoundly brain damaged, even the raindrops mingling with the tears on my face afterwards in streets filled with Christmas decorations and excited shoppers.

David told me how after a scan had at last confirmed Ivan's rare condition – called Ohtahara syndrome – the paediatrician purposefully placed a box of tissues beside them. Their son, the doctor told them, would have "very serious difficulties". David, struggling to take in the diagnosis, asked whether that meant he would have trouble with his maths, or would never walk and talk. The paediatrician said simply: "I'm afraid it means he probably won't walk or talk."

Like most families, we struggled to handle the shock of the diagnosis, our dreams seemingly destroyed and fearful of the future while desperately trying to hold a shattered family together. We went from the joy of birth to the depths of depression at breakneck speed. There were periods of intense brooding and tortured discussions. The Camerons also went through a similarly grim period, sleeping beside their son on hospital floors and endlessly discussing how to cope as the hot spring of 2002 turned to summer.

David has spoken very movingly in public of how "you grieve for the difference between your hopes and reality". Eventually, you do learn to cope with the trauma of living your life on an edge, of having your sleep disrupted and your social life occasionally wrecked. More importantly, you come to adore the child as much as any of your other children even when, as Sam admitted to me, you worry about their welfare every second you are apart. I once asked David if he thought Ivan enjoyed life. He paused for a long time, then looked up and said: "Not really, I think his life is very tough." But he called him his beautiful boy and Ivan meant the world to him and his family.

They would take Ivan for walks in the country, or for a swim in a pool belonging to a neighbour who kept it especially hot for Ivan, or visit another neighbour who kept pigs; like any six-year-old, Ivan was fond of animals. These are the simple joys that make family life so central to the human condition. With my son there are so many happy memories: playing football in the park, going to gigs and just larking around at home. With my daughter, there are also many fond memories, but they are simpler pleasures: bouncing her on my knee as we listen to music together or watching her bob in the water, supported by inflated rings and armbands. She even tolerates my guitar playing.

Listening to some of the coverage in the media yesterday, there is a common sentiment expressed that Ivan's death will be a form of closure, that there might be a sense of relief that the struggle is over. This is a view that reveals so much about attitudes to people with disabilities. No one should be fooled: the only feeling will be one of numbing grief at the death of a cherished member of a family. People have asked me if the death of a disabled child is less traumatic, given that it is always a possibility. I can't imagine that the trauma is any less intense.

We are fortunate that Iona is still with us and that we can still enjoy her life. But no parent ever gets over the death of a child – and a disabled child, even one with profound learning difficulties for whom life is a struggle and filled with pain, is no different. Our daughter's life brings us sorrow, but it also brings us intense joy and meaning. Ivan's death means only that, beside the happy memories, there will be a scar on his parents' hearts that can never be healed.

Ian Birrell is Deputy Editor of The Independent