Living with epilepsy

THE first time Anne-Marie Fahey had an epileptic fit, the little girl's terrified parents had no idea what was happening. It was 9pm and Leila Fahey had gone through to the children's bedroom to check on six-year-old Anne-Marie and her little brother Peter, then aged three.

"She had already done all the convulsing, and she had been very sick," Leila recalls. "Then she started convulsing again. We didn't know what was happening at all. We thought the worst: we really thought we had lost her."

For anyone who has not experienced one before, epileptic fits can be terrifying. Leila - daughter of retired Ryedale-based racehorse trainers Peter and Marjorie Easterby - says that when Anne-Marie, now nine, has a bad fit she becomes deathly white, her body jerks wildly, her pupils dilate, and her breathing becomes tortured and choked.

That first fit was three years ago. In the years since, Anne-Marie and her family have learned to live with epilepsy. But it has not been easy - and it has been made all the harder, Leila says, by the stigma and the lack of understanding attached to the condition.

Epilepsy is actually the most common serious brain disorder in the world. In the UK alone, more than 400,000 people suffer from epilepsy - 100,000 of them children. It is estimated that every day 82 people somewhere in the country will have their first seizure.

And yet the vast majority of people - like Leila and Richard that first time with Anne-Marie - would have no idea what to do in the event of someone having a fit.

"As a parent, that is very frightening," Leila said. "You're frightened to leave them for a moment, frightened even to let them go to school in case of what might happen."

Leila actually arranged for her health visitor to pay a visit to Anne-Marie's school to talk to her teachers and explain what they should do in the case of the little girl having a seizure.

The school, Leila says, has been fantastic: but it can never take away the worry of wondering if her daughter is OK - especially because there is never any warning before a seizure.

"She can't tell me when it is coming, and there is no change in her behaviour," Leila said.

The family tries to ensure Anne-Marie has as normal a life as possible. She has her own pony, which she loves to ride. And she's even been on a skiing holiday with her parents.

But because of her condition, arranging the holiday was not easy. For a long time, Leila could not find anyone who would offer travel insurance. "She has to be insured, and we have to be as well," she said, "because if she can't fly back for any reason, we can't either - or at least one of us can't."

Eventually, with the help of the British Epileptic Association, they were able to arrange cover. But the problems were typical, Leila says, of the ignorance that surrounds epilepsy.

Epilepsy, she says, is stigmatised, overlooked and misunderstood - and research into the condition is seriously under-funded. About 1,000 people die in the UK every year because of epilepsy, she claims - more than from HIV/Aids or Cot Death Syndrome. Yet the money devoted to research and treatment of epilepsy is peanuts. Epilepsy charities received just £5 million a year in donations - and although the condition is about as common as diabetes and asthma, Epilepsy Clinics are few and far between.

Epilepsy services in the York area are comparatively good - but the British Epilepsy Association says over the country as a whole they are very patchy. Leila and Richard themselves can afford to pay for a former qualified nurse to help look after Anne-Marie: but Leila is all-too-aware that many parents of epileptic children are not so fortunate.

That's why, for the past two years, her parents, Peter and Marjorie Easterby, have sponsored a horse race to raise money for research into the condition - and to raise awareness about it.

"We thought, because the family is quite well-known, we may as well put that to good use," Leila said.

This year's race - the Fund for Epilepsy Novice Steeplechase at Wetherby on December 2 - raised £5,000 for the Fund for Epilepsy charity, which is raising cash to set up a centre of excellence at King's College London for research and teaching about the condition. A family friend who took part in this year's Great North Run raised a further £2,000.

Leila admits she is overwhelmed by the generosity and support shown - but stresses there is much still to be done.

What worries her most, she admits, is her daughter's future. Many people think epilepsy can be controlled by using drugs - but that is just one of many misconceptions about the condition, Leila says. At least a quarter of cases cannot so far be controlled - and Anne-Marie is one of them.

"Will she grow out of it? We just don't know," Leila says. "There are so many children with this condition. But at least if we start trying to raise awareness and get rid of the stigma and ignorance now, it may be a better world for them in future."

u The Fund for Epilepsy can be contacted on 01924 252469. The British Epilepsy Association website, which has lots of useful information on the condition, is: www.epilepsy.org.uk. The charity's freephone helpline is 0808 8005050.

What to do if someone has a fit

1 Don't panic. Simply make sure the person is not going to hurt themselves, by for example removing any objects on which they could bang their head.

2 Do NOT put anything in their mouth - that can be extremely dangerous.

3 Once they come round, reassure them and make sure they are comfortable, but don't crowd them.

4There is no need to call an ambulance, the British Epilepsy Association says, unless a fit lasts for more than four to five minutes, or a person fits repeatedly.