JO HAYWOOD talks to a North Yorkshire family urging people to take part in National Jeans for Genes Day.

EVERY child gets the odd lump and bump. When they trip over their own feet, get tangled in a skipping rope or fall off their bike, their parents kiss it better and utter the well-worn phrase "You'll live".

But for children with hereditary angioedema, a kiss and a few words of comfort are not enough. For children with HAE, the odd lump and bump can be fatal.

This rare genetic condition, which affects about one in 50,000 people, causes gross swellings to appear, particularly after a trauma such as a fall or a blow, that can affect the face, hands and feet, and can interfere with the bowel, causing excruciating abdominal pain and vomiting. If a swelling occurs in the throat, it can completely close the airways.

The Jackson family, of Easingwold, know all about HAE. Chris Jackson's grandfather died as a result of the condition, his mother was a sufferer, he was diagnosed with the disorder as a teenager and he passed it on to all his three children.

He and his wife, Jane, lost their daughter Sammy when she was ten years old. She died a decade ago as a result of meningitis, but they believe HAE played a part in her death.

"She was taken into hospital at 11am and was dead by 3pm," said Chris. "We believe HAE had something to do with the speed of her death."

Their remaining children, Martin and Sarah, 25 and 23, refuse to let the disorder rule their lives.

"Thankfully drugs have moved on a lot since my mother's day," said Chris. "I remember her having numerous bilious attacks during my childhood.

"I really struggled as well, particularly in my 20s, because of the swellings and the debilitating bilious attacks. It would completely knock me flat for days at a time."

Despite dire doctors' warnings, Sarah has become something of a world traveller, spending long periods of time in China and France. She is now living in Vienna.

"She has been shown how to put her own line in, so she can inject herself as soon as any symptoms start," said Chris. "If she has any sort of trauma, such as a car accident, she knows she can get a line in quickly and stop the swelling. It literally is a lifeline for her."

Martin, who lives in Nottingham, had a near miss a couple of years ago when a facial swelling left him temporarily unable to speak and began to spread menacingly towards his throat.

"It was very frightening," said Chris. "We got him to York Hospital and they were able to act quickly because they had some of the drugs already set up for another patient."

From the outside, the Jacksons may seem like an unlucky family. But they don't see it that way. Compared to some of their fellow sufferers, they know they have got off relatively lightly.

"We deal with it," said Chris. "Some of the kids you see at conferences put your own problems into perspective. Martin and Sarah are determined this condition won't rule their lives. And it certainly won't stop them having children themselves if they want to."

The conferences in question are run by PIA - the Primary Immunodeficiency Association - which helps families deal with doctors and consultants by keeping them up-to-date on new information.

The association is one of the charities that benefits from Jeans for Genes Day, which celebrates its tenth anniversary this Friday. The annual appeal, which encourages people to wear jeans instead of their usual work clothes or school uniform and make a donation, has raised more than £20 million since its launch in 1995.

Backed by celebrity patrons including Denise Van Outen, Robbie Williams, Caprice, Sue Barker and Postman Pat, it is hoped this year's appeal will raise a further £4 million for vital genetic research and family support services.

"PIA does great work - it's a phenomenal group," said Chris. "Jeans for Genes is a vital fundraising effort that helps to keep it going. It means a lot to families like us if people get involved."

For more information, phone the Jeans for Genes' freephone number - 0800 980 4800 - or register online at www.jeansforgenes.com. You can also show your support by buying a denim wristband, a pin badge or T-shirt from Matalan.

Updated: 10:30 Tuesday, October 04, 2005