A family struck by a rare and incurable genetic disease is running a successful campaign to raise money for research.

The Stillwell family from Worthing have been fund-raising for more than a year to help scientists learn more about von Hippel-Lindau (VHL) syndrome.

They have raised £12,000 so far and the money has been given to researchers at the University of Birmingham.

It will be used towards the cost of a research assistant for Eamonn Maher, the head of the university's medical genetics clinic and an expert on the condition.

Allen Stillwell, 41, was diagnosed with VHL in November 2001 when his wife Tracey was three months pregnant with their fourth child.

VHL is an inherited condition which causes tumours throughout the body, including the brain, eyes and kidneys.

The only treatment is palliative - keeping a close eye on the patient and removing tumours as they form.

The earlier the condition is spotted the better but eventually the constant appearance of tumours, some of them cancerous, can lead to vital organs deteriorating.

The condition has cut Allen's life-expectancy to 55 and he believes the same syndrome killed his mother when he was 31.

Two of the couple's daughters, Tantara, eight, and Ella, six, also have the condition.

Ella's twin sister Mia and the youngest child Freya, two, are clear so far.

Mr Stillwell is determined to keep positive and live as normal a life as possible for his daughters' sake.

He has had numerous operations to remove tumours from brain, kidneys and eyes. His most recent operation was in April at Hurstwood Park Neurosciences Centre in Haywards Heath.

However, doctors have just discovered another tumour growing so he is likely to have more surgery later this year.

In spite of this Mr Stillwell is still working as a self-employed plumber and keeps as fit as possible.

Mrs Stillwell, 33, said: "He is keeping strong for the children's sake. If they see how well he is coping then they will not be frightened.

"As a family we are positive. We are determined a cure will be found for VHL and so we will be continuing our fund-raising efforts.

"Tantara and Ella are both fine at the moment but will have to have regular check-ups and screenings as they get older.

"Early detection is very important which is why we decided to have our children tested for the condition.

"We did not want them to have to go through what Allen went through and have a shock diagnosis as an adult.

"Raising money for research is a great therapy for me and the rest of the family and so it is going to continue."

The family have set up a charity called Tantara's Wish and have held several fund-raising events including a ball, a golf day, a hike and barbecue.

Supporters in Worthing and further afield have also contributed to the campaign.

Preparations are now under way for a second charity ball in February.

Anyone interested in helping out or donating to the charity can contact the family at tantaraswish @msn.com