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For 3-year-old Eddison Miller, playing outside isn’t as simple as walking out the door— he has to wear a special suit because he’s completely intolerant to ultraviolet rays.
Miller, of Kingsnorth, Kent in the UK, was 13 months old when he was diagnosed with xeroderma pigmentosum (XP), an extremely rare, incurable genetic condition that puts him at risk for getting cancer from UV rays, The Telegraph reported. There is no cure for XP.
"The condition affects every aspect of his life and we have to think of things that others would take for granted," his mother, Nicola, told The Telegraph.
Eddison has to wear UV-blocking clothes, gloves and a hat with an attached visor made of film that covers his face, neck and shoulders. His skin must also be covered in a SPF 50+ sunblock every three hours.
The family home has been adapted with UV-proof film and safe lighting to meet his needs and they’ve built an indoor garden for days when it’s too bright outside.
"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,” Nicola said, adding that Eddison is a normal little boy who likes riding his bike and playing with his younger brother, Raife.
When Eddison was three months old, he first began showing symptoms of light sensitivity and he developed severe abnormal burns. At first, doctors thought it was allergies, but tests revealed he had XP.
XP affects fewer than 100 people in Britain and around 1,000 people in the world, according to The Telegraph. Eddison is one of the youngest diagnosed.
The disease isn’t just a danger outside.
"UV is present during all daylight hours and danger is still present indoors, with UV rays emitted by many sources of artificial lighting,” Nicole told The Telegraph.
To help Eddison understand his condition, Nicola wrote a story and now the family has launched a set of teddy bears and books with the hope that their “Little Ted” products can be sent to all the estimated 300 children worldwide affected by XP. They founded the Teddington Trust in order to repay the kindness and support they themselves have found. The funds currently are going toward the free distribution of the books and bears.
Nicola and Eddison’s father, Andrew, have had their lives completely changed by their son’s diagnosis, but hope their fund can help him and others.
"Our goal is just to help him live his life like a normal child,” Nicola said.