Meet the blind one-year-old boy who never sleeps

A one-year-old who suffers from a rare genetic illness that means he barely ever sleeps still manages a big grin every day for his parents.

Curly-haired Rio Vicary suffers from Angleman's Syndrome, a rare condition which means he is unlikely to walk or talk and needs round the clock care.

The brave tot was diagnosed when he was just two weeks old and has spent most of his life in hospital where he is monitored by a dozen consultants. Rio is also albino which has left him blind but despite that he loves the light and enjoys music.

Rio Vicary suffers from Angelman Syndrome which means he is unlikely to ever walk or talk and needs very little sleep. His brothers don't have the genetic condition

Now his parents Gemma and Wayne are creating a sensory room for him at their home in Halfway, Sheffield, so he can spend more time with the couple and their other sons Cody, seven and Jayden, aged four.

Rio is getting specialist care at Sheffield Children's Hospital where he has spent most of his short life since the illness was diagnosed. Support from health services has been crucial for the family.

 

Gemma said: '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.'

Rio is now fitted with a tracheostomy - a tube inserted into his neck - for feeding time. It followed a terrifying incident when Gemma, 27, had to take quick action to save her son's life after he started choking.

She said: 'He was drowning in his milk and I was on my own feeding him.He turned blue and I dialled 999 for help.

'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.'

Despite being blind little Rio loves the light and has a special sensory room at home

Rio pictured with his mother Gemma and brothers Cody (left) and Jaydyn. They all make sure his feeding tube remains clear

WHAT IS ANGELMAN'S SYNDROME?

A chromosome disorder that is inherited from the mother and affects one in 25,000 children.

The child appears typical at birth with no major defects, however developmental delay becomes apparent by six months.

Sitting occurs by 12 months; walking by three to four years. They have major speech impairment with no or minimal use of words.

People with Angelman's laugh and smile often, especially in response to stimuli. Hand flapping and hyperactivity is common.

There is a tendency to pinch, grab and bite in older children.

They have very disrupted sleep patterns but this diminishes in later childhood.

Someone with Angelman's has good general health and a normal lifespan.

Gemma and Wayne, 41 are getting married in November and taking the entire family, including Rio, on a honeymoon holiday to Lanzarote.

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

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's visit http://www.angelman.org/