Clarke Lister was out for a bike ride when he had a sudden haemorrhage and died. But 11 years after his death, his family refuses to let his memory die and are still campaigning tirelessly in his name. Sharon Griffiths meets them

CAROLE Lister is a campaigner, has barely stopped for the last ten years, heading a remarkable achievement by a remarkable family. A year after the sudden death of ten-year-old Clarke Lister, his parents Carole and Brian and sister Michelle set up a charity in his name.

Ten years later the Clarke Lister Brain Haemorrhage Foundation is not just still in existence but goes from strength to strength. They have raised around £500,000, funded a research programme and a support group, and helped numerous sufferers and their families. A drop-in centre opens soon and they have even more ambitious plans on the brink of fruition.

"We started the charity because we wanted to know why Clarke died, whether we could have recognised what was happening, whether we could have done anything to prevent it. We still haven't got the answers and until we do, we'll keep going," says Carole at her home in Peterlee.

Clarke, an avid football fan, had been watching the England's win over Scotland in Euro 96. Then he went out on his bike, got off on to the grass verge and went into a coma. Two days later he died from a massive bleed in his brain - a subarachnoid haemorrhage brought on by a weakness in the arteries.

"He'd had a headache the week before, but the only clue was that he had been so cold. It was a red hot day, but he had his coat on," says Carole.

The family was stunned.

"Clarke was a real lad, loved sports. He did karate, went on his bike, played football. When we were on holidays, even when he was young, he'd want to try everything... dash in the sea, on the banana boat. And the thing was that I had no fears for him," she adds.

Clarke had told his parents that if anything happened to him, he wanted his organs used to help others, so determined at age ten that he had filled in a donor card. His parents honoured his wishes and his death gave a fresh chance of life to four other young people.

At first the Listers were told that the chance of a brain haemorrhage in someone so young was extremely rare. "But the more we looked at it, the more we found that it wasn't as unusual as we thought, and that's why we want answers. We want people to know what to look for. If we can recognise the symptoms we can act swiftly and maybe save a life," says Carole.

Clarke's death and the founding of the charity changed the family's life for ever. Carole was working full time as an advertising rep on The Northern Echo at the time, though she has worked on a number of other papers in the region. Her experience - and her personality - proved invaluable.

"At first I didn't know what to do, but I knew I had to do something and I had to start somewhere. So I just went round literally knocking on doors, asking people and businesses for money."

For five years after Clarke's death, Carole was working full time and using every spare moment to raise money. Just as importantly as the local people, businesses and celebrities who helped, she had the support of some of the top medical experts in the field, who became trustees of the charity.

"They were as anxious as we were to learn more about the condition," she says.

Carole learned that in one year 1,100 people in the region had a brain haemorrhage, that 58 per cent of all victims died within 48 hours, 38 per cent were left severely handicapped and that only four per cent made a good recovery.

"We knew that even if Clarke had lived, the chances were that he - and we - would have needed a lot of help."

That led to the formation of a support group. "Because the best people who can help you are those who've gone through it," says Carole.

Their phones ring constantly, day and night. "There's always someone wanting help or advice or just to talk. We're not counsellors, but we know what they're going through. We understand," she says.

Carole has numerous stories of people she's met, young and old, and how their lives have changed with help, with the right treatment, rehabilitation and support. They lobbied for a specialist nurse - the Lister nurse - to help patients and their families. With the 11th anniversary of Clarke's death imminent, Carole still brims over with enthusiasm, energy, ideas about where to go next. She is boundlessly optimistic, knowing that there are things that can be done and determined to do them, ideally all over the North-East.

At first, Carole and Brian did everything they could to enable daughter Michelle's life to go on as normal; "She was devastated, but we wanted her to have her own life," says Carole. Michelle was 20 when Clarke died and studying for a degree. She worked for a bank, then did a postgraduate degree while expecting her baby, Molly, but, of course, always helped with the charity. When the person working with Carole for the charity left, Michelle had to apply formally to the trustees for the job and now uses her financial experience and training to find a way through the jungle of grants and funding.

"We want the charity to be self-sustaining. People around here have been amazingly generous, but there's only so much you can expect them to give. If the charity is to go on it has to be run like a business. It's the only way we can get things done. And we're recognised now. People listen to us."

The major aim will always be research - to get answers to those questions. Their first researcher at the University of Durham is currently three years into a four year programme and already finding some impressive results. Another research programme will start next year.

Mother and daughter work well together. "Of course we argue a lot, but I suppose I can ask more of Michelle, because she's not like an ordinary employee."

Michelle raises her eyebrows in resigned and indulgent recognition. She has clearly inherited her mum's drive and positive attitude. They make a formidable team, with Brian keeping them steady.

Many bereaved parents have set up charities in the wake of a child's death. Many of these achieve great things and then after a few years the charity gradually fades away as the family is ready to move on and hand their appeal over to a bigger organisation.

"I can see why. Because it's hard. Very hard work. It never stops. It takes over your life completely," says Carole, after ten years of charity nights, shows, dinners, stalls, fun runs, and sponsored everything. "And apart from anything else, I'm ten years older than when I started this. I just don't have the same energy."

Carole herself has been ill, Brian had a serious car accident and a triple by-pass, there's Carole's elderly mother to look in on four times a day.

"But it's been an incredible journey. We never think about giving up. There's just so much to do, to find out. We're still looking for answers.

"Clarke was a very tactile little boy, full of hugs and cuddles. I still miss that. But we believe Clarke was here for a reason and although we know we can't bring him back, if through research we find a reason and save just one life and if special care and understanding is made available to those who have suffered a brain haemorrhage, then we feel Clarke may not have died in vain."

For a lovely little lad, it's a terrific memorial.

The Clarke Lister Brain Haemorrhage Foundation support group meets on the first Tuesday of the month, a drop-in centre is also starting soon. For details tel: 0191-586-9239 or 0770-554-262.

The charity has places on the Great North Run on Sunday, September 30; and on the Great North Walk on Sunday, July 15 - distances of three, four or nine miles, suitable for all the family. Details and phone numbers as above.