The boy who hides from the sun

By Emma Carson
BBC News, Lincoln

Nathaniel feels self conscious wearing his visor in public

Nathaniel Spittles, like any 10-year-old boy, is getting excited about going on his seaside holiday.

But unlike other children, he will not be able to play in the sun. Nathaniel has a rare condition which makes him allergic to sunlight.

Xeroderma Pigmentosum (XP) affects between 150 and 200 people in the UK.

Nathaniel, from Lincoln, is a typical boy who loves a football kick about and singing "Show Me the Way to Amarillo" on the karaoke.

His mother, Chris, realised something was wrong a month after Nathaniel was born.

"He went red in the face and it all started to flare up," she said.

"We took him to the doctor's and then we had to take him to the hospital.

The family have adapted well to Nathaniel's condition

"At first they thought it was either baby eczema or a bug called staphylococcus and basically I think he was in hospital for about three weeks - his hands were bandaged up and his face was all red."

But his condition was actually diagnosed two years later at Ninewells Hospital in Dundee.

Nathaniel is the youngest of four children, but Ms Spittles said his brother and two sisters have adjusted well to his needs.

When he was little they waited until he took his nap before they went out to play.

Their house in St Giles, Lincoln, is in constant shade to ensure Nathaniel is protected.

His school routine is fairly normal, but he cannot go outside at break-time and dinner-time between March and October.

So long as he's happy I'm happy. So long as he's protected and covered up then that's okay. Chris Spittles, mother

Friends do stay in with him, but Nathaniel admits he envies them being able to go outside to play - he says it makes him "sad" and the situation "isn't fair" on him.

His mother said: "I think at the end of the day he likes to go out and enjoy the weather just like everyone else but he's limited. The best time is night time for him."

Nathaniel has to apply sun cream three times a day, and wear protective clothing most of the time when he goes outside - but can feel self-conscious.

Ms Spittles said: "If it's really really hot between eleven, twelve and one o'clock then I'll say, 'Look, wear your visor while we go into town, then when we get there, we'll go into a load of shops so you don't have to wear it'.

"But he won't wear it all the time because he doesn't like people staring at him."

Xeroderma Pigmentosum XP is a genetic disorder in which the skin lacks the enzymes required to repair the damage UV-rays do to the skin The skin ages more quickly Patients are more vulnerable to skin cancers Some people may not be diagnosed as having XP until adulthood

Apart from the annual family trip to Blackpool, Nathaniel goes to the Owl Patrol, a night-time club for children with XP and their families, which takes place in February in Parmoor, Bucks.

As the name suggests, many of the activities - trampolines, bouncy castles, football, fireworks - take place outdoors after dark.

Chris said she and the family live very much in the present.

"So long as he's happy I'm happy. So long as he's protected and covered up then that's ok.

"We don't look to the future we just take each day as it comes because obviously we don't know which way his condition is going to go."