By Pamela McGowan Health reporter

Last updated 11:33, Friday, 25 April 2008

WHILE her friends play outside in the sun, three-year-old Alice Tyson is forced to watch from the shadows due to a rare condition that could leave her with skin cancer.

Rallying round: Three-year-old Alice Tyson will have a day out with her family thanks to local companies. Affecting one in a million people, Alice’s Xeroderma Pigmentosum means she cannot go outside without being completely covered up including wearing a mask over her face

Affecting one in a million people, Xeroderma Pigmentosum (XP) means any exposure to sunlight will permanently damage her skin and increase her chances of getting the disease.

Since being diagnosed with the disorder just two months ago, Alice’s life has changed forever and she is now forced to spend her days indoors with the blinds firmly closed.

If she does go outside, even for a few seconds, she must be fully covered up and wear a special hat to protect her face and head from UV rays.

This is something that Alice, who will feature on a BBC documentary tonight, finds hard to understand. Yet she will have to put up with this level of caution for the rest of her life.

Her parents Neil and Tracey, of Moorhouse, near Carlisle, are still coming to terms with the diagnosis – but say they are determined to give Alice the best possible childhood.

They are launching a campaign to raise money for a special playroom and outdoor tunnel so the youngster is no longer confined to the darkness of their sitting room.

“The hardest part is seeing her cooped up in here with her toys,” said Mr Tyson, 46. “How do you explain to a three-year-old that she can’t play outside? She doesn’t understand.”

The couple first noticed there was something wrong when Alice developed a growth under her left eye last year.

She underwent a series of tests and in February this year was diagnosed with XP.

Dr Firas Al-Niaimi, a specialist registrar in dermatology at the Carlisle hospital, said patients with XP – often known as Children of the Moon – have skin that cannot repair itself from everyday sun damage.

As a result they suffer abnormal freckling, severe dryness and sunburn which can lead to skin cancer at an early age.

There is no cure, so the only option is to avoid any contact with UV rays, which can even penetrate through glass.

The genetic condition is so rare that Alice is the only known sufferer in Cumbria and one of just 50 nationally.

Dr Al-Niaimi explained it is an inherited illness, but neither of Alice’s parents would have had any idea they were carrying the gene which causes it. And even then, the chances of having a child with XP were just one in four.

Mr Tyson said when they first found out, he blamed himself and worried about the damage that may already have been caused to his daughter’s skin.

“You feel responsible,” he said. “And now we have to be so strict with her, it’s hard. We are just trying to protect her, but she is at such a young age she can’t understand.

“It’s going to affect her forever. She will never be able to live a normal life.”

Mrs Tyson, 43, added that although Alice knows she has special skin, she gets frustrated with the constant fussing.

“She has to have total sunblock on all day and moisturiser at least three times a day. It’s just constant,” she said.

“Some days she starts crying and sobbing and I feel so cruel. Then I get emotional and burst into tears. But at the end of the day she’s our little girl and we will do anything we can to protect her and give her the best childhood we can,” she said.

The couple are now trying to focus on what they can do for Alice – including getting special windows installed at their house so they no longer have to live in complete darkness.

With the help of Carlisle firm Finesse Windows, they will soon have special film fitted on the windows of their home and car to block out the UV rays.

Staff at Kirkbampton School, where Alice now goes to nursery, also hope to do the same to some of their classrooms.

During the making of the Inside Out documentary, which will be aired on BBC One tonight at 7.30pm, producers took the family to Buckinghamshire to meet members of an XP support group.

There, Alice met other children in the same position as herself, while her parents talked to other families and got advice on how to cope.

One of the boys she met had a special tunnel in his garden and an area that lights up at night so he can play outside when the sun goes in.

Alice’s parents hope to raise enough money to build something similar in their garden.

n Anyone wishing to help with the fundraising can contact Pamela McGowan at The Cumberland News on 01228 612661 or pmcgowan@cngroup.co.uk.