Conversation between mother and daughter, Tracey and Alice, about Alice's rare form of skin cancer that means she has to avoid exposure to sunlight.
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The Listening Project
BBC Radio Cumbria, Carlisle
Tyson, Tracey, 1965- (female), Tyson, Alice, 2004- (female, Schoolgirl)
BBC Radio Cumbria
Alice is eight years old and when she was three she was diagnosed with a rare form of skin cancer, Xeroderma Pigmentosum or XP, which means that she has to avoid exposure to sunlight and certain artificial light sources that emit UV. Consequently she has to wear a hat with a visor and gloves when she's outdoors and she cannot sit near windows unless they're covered with a special film to cut out UV light. She has an annual check up at St Thomas' Hospital in London and currently there are approximately 50 people with the condition in the UK. It's genetic and as luck would have it her mum and dad both had a faulty gene but there was a one in four chance their child would be born with the condition. It means she's unlikely to pass it on if she has children as her partner would have to have the faulty gene as well. The only time she's played on the beach was at Morecambe this year when she built sandcastles in the dark. Alice gets very upset when strangers point at her hat and gloves and visor and hot weather is a nightmare as she can't take her clothes off. She is able to go swimming in the local pool after protective film was put up on the windows. She finds it hard to ride a bike as she has to wear a hat and visor which affect her balance. Her mum wants her to have children but worries about the wedding having to be held at night. Alice wishes her parents had been normal and she could do the things that normal children do.
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