Saturday, 10 May 2008

Alice’s rare condition

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.

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

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

If she does go outside, even just 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 featured on a BBC documentary at the weekend, 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 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.

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

The couple, who live with Neil’s mum, Edie, first noticed there was something wrong when Alice developed a growth under her left eye last year.

They took her to the doctor who referred her to the dermatology department at the Cumberland Infirmary, Carlisle. She underwent a series of tests and in February was diagnosed with XP, although she has had the condition since birth.

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

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 they have to avoid UV rays.

Alice is the only known sufferer in Cumbria and one of just 50 nationally.

Anyone wishing to help with the fundraising can contact the family via Pamela McGowan on 01228 612661 or pmcgowan@cngroup.co.uk.