Alex is allergic to sunlight. He longs to play outside. Can spacesuit technology help him?

Alex Webb looks longingly out of the sitting room window as evening turns to twilight. An avid Manchester United fan, the nine-year-old is desperate to get into the garden and kick his football around. Frustration etched on his face, he cannot go outside until nightfall. Even the smallest exposure to sunlight could kill him.

Alex suffers from a rare genetic disease called xeroderma pigmentosum (XP). The condition – highlighted in the Nicole Kidman film The Others – causes an extreme allergy to ultraviolet light. There are around 300 known sufferers of XP across Europe and 40 in the UK, many of whom are under 18. Most are forced to live a vampire-like existence, shunning daylight at all costs. Even a few minutes of sunshine results in severe burns, blistering and, almost inevitably, cancer.

Now Alex, who lives in Prestwood, Buckinghamshire, is to try out a new system which could revolutionise his life. The European Space Agency (ESA) has spent two years perfecting a state-of-the-art anti-ultraviolet suit and mask to combat XP – and Alex is to become the first child in the UK to test them.

Currently, Alex, who attends Prestwood Junior School, must wear a French Foreign Legion-style hat every time he leaves his carefully protected home. A crude plastic visor is attached to the hat with velcro, and a teacher helps him to apply factor-60 suncream to his skin every two hours. The school has also attached special film to all the classroom windows to block out ultraviolet light. "XP isn't fun," said Alex, who must also carry a light meter around with him. "It's so unfair."

Alex's mother, Sandra, 46, hailed the new ESA suit and mask as a "breakthrough". The inititative began in early 2001 when Pierre Brisson, ESA's head of technology transfer and promotion, read an article about XP in Paris-Match magazine.

"The article said that Nasa was selling anti-ultraviolet suits to American kids with XP, and I was completely furious," said M Brisson. "I thought, why are we always made out to be stupid Europeans? We can find a solution ourselves – and we can do it better than the Americans."

M Brisson persuaded the ESA to create a 10-strong task force, including doctors and engineers from the UK, France, Spain, Portugal and Italy. Based at the ESA's headquarters in Noordwijk, the Netherlands, M Brisson also enlisted the help of a Hugo Boss designer. "I wanted to make something that not only worked but looked good," said M Brisson.

The task force came up with an ingenious solution that both protects XP sufferers and combats the stigma associated with the disease: undergarments made from ultra-violet protective tissue. By wearing this layer next to the skin, XP sufferers can wear whatever they want over the top. This is combined with a streamlined helmet that has a clear visor and a cooling system adapted from space suits.

The suits and masks will be launched at next month's Paris Air Show after final trials. "These things are going to make the quality of life so much better," said Mrs Webb.

Alex complained that people made fun of his old mask. "Some of them try to lift it up and there's only one thing I can do – run away." If the new system is successful, Alex, and Europe's scores of other XP children, won't have to hide any more – either from bullies or the sun itself.