Killer bug that took our Lucinda

The schoolgirl was struck down by the food poisoning bug E coli 0157 and spent her last days on a life support machine at Guys Hospital in London.

Her parents Jayne and Peter Klus-Roberts are now campaigning to ensure other children are protected from the deadly bug.

A picture of Lucinda's smiling face sits in the Klus-Roberts family's Seaford home.

Lucinda was just an ordinary nine-year-old schoolgirl who returned home from Seaford County Primary School one day in October 1997, feeling unwell.

She complained of "bad pains in her stomach" but was still eating and drinking.

Like most parents, Jayne and Peter thought their previously healthy and popular daughter had a tummy bug and would recover after a day in bed.

But she didn't.

Showing no signs of improvement, her concerned parents drove her to the Royal Alexandra Hospital for Sick Children, in Brighton, where doctors thought she possibly had a grumbling appendix.

Her condition deteriorated and she started showing signs of Haemolytic Uraemic Syndrome, which leads to kidney failure. She was transferred to Guys Hospital, in London.

She spent her ninth birthday in hospital with her parents at her bedside, laying her presents on her bed.

Three days later, she died after her life support machine was switched off.

From being a happy-go-lucky schoolgirl, looking forward to Christmas, Lucinda had fallen ill and died within the space of 12 days.

It was only after her death doctors were able to confirm 100 per cent she had fallen victim to the E coli 0157 bug.

Devastated by their loss, the Klus-Roberts's, backed by relations and friends, returned home to pick up the pieces.

The couple mourned privately and tended Lucinda's younger brother, five-year-old Meryk, who also contracted the bug but thankfully made a full recovery.

The brave couple then turned to campaigning for awareness of the dangers of E coli in a bid to spare other parents.

Jayne said: " The past is now over. We cannot bring back our daughter but we can do something to make sure other parents do not go through the same thing as us.

"We want to make sure as many precautions as possible are taken to prevent the infection from striking."

The couple want the public to be aware of the symptoms of E coli 0157, which appears to attack the young and the elderly. They also want better testing provisions to be made available in hospitals.

The symptoms, which include diarrhoea with blood, vomiting and abdominal pain, can lead on to Haemolytic Uraemic Syndrome, which includes reduced urine and kidney failure.

Peter and Jayne are also calling for higher hygiene standards in schools with better food storage provision, including refrigerators to store packed lunches.

They are distributing colourful hand washing posters, which are now available to all East Sussex schools saying: "Wash your hands and wave goodbye to the nasty bug called E coli 0157."

The Klus-Roberts's are also members of HUSH, the E coli support group, which is urging greater cleanliness in food preparation to reduce the risks of further cases of bacterium -linked diseases.

Already, their campaigning has brought some success.

The Royal Alexandra Hospital for Sick Children has introduced a quicker method of testing and the debate on refrigerators for schools is hotting up.

It is still not known how Lucinda caught the disease.

She always took a packed lunch to school and Meryk still does the same.

Jayne is meticulous in ensuring Meryk's packed lunch is kept as fresh as possible.

She makes it last thing at night and cools it in the fridge overnight.

When he leaves for school, she puts an ice pack on the top to ensure the coolness filters down through the sandwiches.

Jayne said: "Warm air rises and cold air descends, so there is no point in putting a cooler on the bottom."

She also makes sure Meryk has a bacterial wiper to clean his hands with.

Their campaign for refrigerators has been taken up by their MP, Norman Baker.

Health Secretary Alan Milburn is also aware of the campaign and the couple are hoping the national publicity will lead to parents, schools and other organisations, taking further measures to prevent any more deaths.

Mr Baker has mentioned the tragic death of Lucinda in Parliament to bring home the need for schools to have refrigerators where children can store their food.

Jayne said: "Having fridges available for school children to store their packed lunches is one way forward.

"There is a case for every school in the country to have refrigerators where food can be stored."

Mr Baker, who has been in correspondence with ministers during the past three years about the implications of Lucinda's death, said: "There should be a greater awareness of the implications of E coli for the young and the old.

"We now have more food coming from processed sources' rather than natural sources and we have to make sure we do all we can to make sure it is safe."

Putting fridges into all schools would cost thousands for each education authority in the country.

Some schools have already introduced them but there is no statutory requirement to do so.

Seaford County Primary School still does not have a fridge facility.

But staff have been more meticulous than ever in ensuring children wash their hands at the school before meals, even though there is nothing to connect Lucinda's death with the school.

West Sussex County Council, which scrapped the hot school meals service and now relies heavily on sandwiches as a substitute, says it is fully aware of the need to keep sandwiches on sale cool.

Jane Robinson, spokeswoman for the council said: "All the sandwiches we provide are delivered in refrigerated vans and when they arrive at schools, are stored in the coolest possible place."

East Sussex County Council also confirmed it encouraged schools to store sandwiches in the coolest places but left the decision as to whether each school had a fridge up to the headteacher. E coli 0157 is a bacterium which exists and multiplies in the intestines of cattle and it has also been found in sheep and other animals.

But microbiologists have pinpointed two predominant food sources, ground beef and unpasteurised, untreated milk.

The exact way in which it is transferred to humans still needs further research. Athough the intestines of cattle, which may be harbouring E coli 0157, are removed during slaughter, spillage of the contents of the intestines can occur.

Poor hygiene standards may allow faeces to contaminate the meat.

It is because of these risks that slaughterhouses now face incredibly tough health and safety checks, backed up by huge fines and closure threats if they do not comply.

E coli 0157 is so strong, it survives acidity and freezing but it is destroyed by heat treatment through cooking.

Hamburgers are a worry and the E coli Support Group urges people to ensure the juices run clear and there are no pink bits of uncooked meat in them.

At room temperature, E coli 0157 on one small piece of ground beef can multiply rapidly, although cooling food by refrigeration can prevent it spreading.

Matt Dunkley, assistant director of education at East Sussex, has been working with the Klus-Roberts's to bring home the need for cleanliness, hand washing and proper food storage provision.

A ten-point plan, aimed at parents who send their children to school with packed lunches, is now available.

It includes many obvious actions, such as thoroughly washing and drying hands, always using clean knives when preparing sandwiches, not using cooked sandwich fillings and making sure not to use food past its use-by date.

Mr Dunkley said: "We believe the best way forward is reducing the risk of food poisoning.

"When it comes to refrigerators in schools, that is up to each school and if they consider it a budgetary priority.

"To be really practical you need a refrigerator in each classroom but that would pose problems on space as well as finance."

Jayne and Peter are campaigning through Hush for better hand washing facilities in schools, all soap to be anti-bacterial and all schools and organisations to be sent literature on what E coli is.

Peter said: "We still do not know where Lucinda got the E coli from. We want to ensure there is something positive from Lucinda's death."

If people want further information on E coli 0157, handwashing posters or details on symptoms, they should contact Hush on 0800 731 4679.