27/11/2014 07:06 GMT | Updated 20/05/2015 06:12 BST

Boy, 3, Wears Special UV Protection Suit To Shield Him From Sunlight


A three-year old boy can't play outside unless he wears a special protective suit because sunshine could kill him.

Eddison Miller is one of the youngest people in the world to be diagnosed with xeroderma pigmentosum (XP), an incurable genetic condition that means he could get cancer from sunlight.

The condition makes him completely intolerant to UV rays so he has to wear a special UV-protective suit to ensure he is completely covered up whenever he goes outside.

His condition is so severe he can't even be near the door at home when the postman opens the letter box.

His body must also be covered by factor 50+ sun block every three hours and he plays in his own, specially-designed, indoor garden when it is too bright outside.

The family home, in Kingsnorth, Kent, has been adapted with UV proof film and safe lighting to meet his strict needs.

The condition affects fewer than 100 people in Britain and around 1,000 around the world, and he is one of the youngest to be told he has the disorder.

His mum, Nicola, 36, said: "The condition affects every aspect of his life and we have to think of things that others would take for granted.

"People don't understand the everyday issues we have to consider. We have to make sure Eddison isn't near to the door when the postman opens the letterbox and we have had to have an AC system installed because we can't open any windows in our house.

"But he is just a normal little boy. He loves getting messy in his sandpit, playing on his bike or with his little brother Raife.

"Our goal is just to help him live his life like a normal child."

Eddison started displaying symptoms of being extremely sensitive to both natural and artificial light at just three months old.

His eyes and skin were worst affected and he developed severe abnormal burns.

After initially assuming he was suffering from allergies, a number of hospital visits and tests at St Thomas's Hospital in London later revealed he had XP.

His parents said it was a common misconception that having XP simply meant keeping out of direct sunlight.

Nicola added: "UV is present during all daylight hours and danger is still present indoors, with UV rays emitted by many sources of artificial lighting."

She said the family looks forward to the clocks going back.

She said: "During the summer I calculated that Eddison and I spent less than 24 hours outside in six weeks so obviously that's an extremely challenging time of year.

"But the minute the clocks go back we get so much more time outside – it's wonderful.

"I know Eddison is going to face many challenges in his life but it is our job as parents to make sure he gets as much out of life as possible."

Following the diagnosis, Eddison's aunt, Rebecca Stewart from Cushnie, Aberdeenshire, set up a fundraising group called the Teddington Trust.

Overwhelmed by the outpouring of support, the family decided they would build on its success and try and help others with the rare disorder.

Now they have launched their own set of teddy bears and books and hope their 'Little Ted' products can be sent to all the estimated 300 children in the world that suffer with the condition.

Nicola said: "We looked for ways to help educate Eddison in understanding his condition, and we immediately looked for appropriate reading that might help us find the words to explain this.

"Eddison loved the initial story I wrote, and really engaged with it so before long I started thinking of further additions to this and a small series of `Little Ted` stories emerged.

"We have set ourselves a goal to provide a copy free of charge to all children within our reach around the world affected by XP."

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