13/07/2012 13:00 BST | Updated 22/05/2015 06:12 BST

Angelman Syndrome: The Little Boy Who Doesn't Sleep And Can't See, But Loves Light, Music And Smiling For The Cameras

Angelman's Syndrome: Meet the little boy who doesn't sleep and can't see, but loves light and music and smiling for the cameras
Rio and his older brothers Cody and Jayden. Pic: Ross Parry

Rio Vicary suffers from Angelman Syndrome, a rare condition which means he is unlikely to ever walk or talk. Rio, one, is also albino and he is blind. He needs round the clock care and rarely sleeps, but still has a big grin on his face every day.

Angelman Syndrome is a disorder inherited from the mother and affecting one in 25,000 people.

Children with the disorder are sometimes referred to as Angels because of the syndrome's name and their youthful appearance.

Rio was diagnosed at just two weeks old. He has spent a lot of his life in hospital, and despite being blind, he loves light and enjoys music and sound.

The little boy is receiving specialist care at Sheffield Children's Hospital, and his parents, Gemma, 27, and Wayne, 41, are creating a sensory room for him in the family home in Sheffield, so he can spend more time with his other brothers Cody, seven, and Jayden, four.

"Because Rio doesn't sleep and wants to play round the clock we get three nights respite a week. Without that I don't think I would be able to cope," says Gemma.

Rio has been fitted with a tracheostomy - a tube inserted into his neck - for feeding time, following a terrifying incident when Gemma had to save his life when he started choking at an earlier age.

"He was drowning in his milk and I was on my own feeding him. He turned blue and I dialled 999 for help," says Gemma.

"I pumped hard on his ribs but he didn't make a sound, then I did it again and a noise came from his chest. He was breathing again by the time the ambulance arrived.

"The tube is a life-saving thing. He is coughing all the time and he needs suction from me with the tube but he should be having it out soon and then we'll hear him for the first time.

Rio will be able to make sounds but he will never talk; that's just one of the symptoms of AS which also affect his intellectual development and causes massive sleep disturbances.

"After they did the genetic testing and diagnosed Angleman Syndrome I was relieved because at least I knew what was wrong with him. Because of the combination of illnesses he has we have found only one other person in the world to match the same conditions, a year old girl in America. We just pray that one day there will be a cure for AS."

Gemma and Wayne are getting married in November and taking the entire family on a honeymoon holiday to Lanzarote.

"Last year we virtually lived apart while Rio was in hospital so we decided to get married and make it a real family affair," says Wayne.

Consultant Gastroenterologist David Campbell said: "Rio has a lot of problems but he is a lovely little boy. His condition is very rare, it makes Rio unique. But despite all his problems he is a happy little boy who can enjoy very basic pleasures like light and music which is wonderful to see."

For more information about Angelman Syndrome visit