A family struck by a rare and incurable disease are devoting their time to raising awareness of the condition and supporting research.

The Stillwell family from Worthing are determined to stay positive and prove that being diagnosed with von HippelLindau (VHL) syndrome does not mean your life is ruined.

VHL is an inherited condition that causes tumours throughout the body, including on 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 cancerous, can lead to vital organs deteriorating.

Allen Stillwell was diagnosed with VHL in 2002, aged 41, and a year later his daughter Tantara, now ten, was also found to have the condition.

Tantara's sister Ella, eight, tested positive in 2004 and in July this year the youngest child, Freya, four, was diagnosed. The only daughter to escape was Ella's twin Mia.

Mr Stillwell's wife Tracey, 35, said the decision to set up the Tantara's Wish fund-raising group in 2003 had really helped.

She said: "The girls love doing all the fund-raising events and the charity work and it has made a lot of difference for them.

"The idea is for everyone to have a lot of fun raising money and support important research at the same time.

"We have raised around £33,000 so far, which has gone towards work being done at the University of Birmingham, but we are hoping to expand next year.

"Our main aim now is to raise awareness and the next big project is to get a leaflet explaining VHL sent out to all GP practices in the country."

Mr Stillwell, who is a self-employed plumber, has three tumours on his brain at the moment and another on his spine but doctors have to wait until they are big enough before they can remove them.

Tantara has a growth on the retina of her left eye and is having laser treatment on it at the Sussex Eye Hospital in Brighton. The condition is dormant in the other two children.

Mrs Stillwell said: "Allen is doing really well at the moment and is very positive.

"He has constant headaches and nausea but he does not let it stop him and is always strong for the girls.

"Tantara is also really good. The girls always have regular eye checks but now Tantara's condition has become active she has to have more tests and other scans to keep an eye on her.

"We have not hidden anything from them and they know all about VHL and what it means. They have a great role model in Allen.

"I read a great quote from someone recently which said that people with VHL never worry if they are going to develop cancer. They just worry when they are going to get it.

"Allen wasn't diagnosed until really late and it was a huge shock. We eventually found out his mother, who had died young, had the condition as well."

Fund-raisers coming up include creating a four-track CD of original songs put together by Maddy Ralls, Zed Mahmet, Paul Cullun and James Heaton, who are students at Northbrook College in Worthing.

Backing vocals on one of the songs was provided by Chesswood Middle School, where Tantara is a pupil.

Sponsorship is still needed to get the CD packaged but Mrs Stillwell hopes to have it ready as soon as she can.

A sponsored sleepwalk is also planned for Worthing seafront on September 8 when people will be urged to dig out their best pyjamas.

For more details about Tantara's Wish or to offer support, visit www.tantaraswish.com