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Brave Rio fights unknown infection

Rio Vicary, three, who suffers with Angelman Syndrome at Sheffield children's hospital  with mum Gemma

Rio Vicary, three, who suffers with Angelman Syndrome at Sheffield children's hospital with mum Gemma

 

Star Superkid Rio Vicary is looking forward to a happy and healthy third birthday – after battling a serious infection his family feared could be fatal.

Rio, who turns three next month, has rare genetic condition Angelman Syndrome, which means he will never be able to walk or talk, and has albinism, leaving him blind.

Over the past 12 months the youngster, from Base Green, has started suffering epileptic fits – and when he was rushed to Sheffield Children’s Hospital running a high fever, doctors were concerned it could spark a serious seizure.

But medics managed to bring his temperature down, lessening the risk of a fit, and now his mum Gemma, aged 29, says she hopes he can enjoy lots of time out of hospital this year.

“He’s been in hospital more or less since he was born, so one of the main things I want is for him to have better health in 2014,” said Gemma.

“It’s not a great way to start the year considering we were in last year for Christmas – but we had to bring him in as he was really poorly.”

Rio – who was given an award at The Star’s Superkids ceremony two years ago – suffers a combination of illnesses so rare his family know of only one other person in the world, a young girl in America, with the same conditions.

But he is still cheerful, despite his struggles, said his mum.

“He’s got such a happy demeanour, he’s always smiling,” she said.

“It’s so hard, though, when your child isn’t able to talk at all. It’s heartbreaking that, if he is ill, he can’t point to where he’s hurting. That’s the biggest thing with Angelman Syndrome – they’ve got no words.”

It is still not clear what caused the serious infection which laid Rio so low.

“He had a really high temperature – over 39 degrees – but they couldn’t find where his infection was coming from,” said Gemma.

“At the minute, they don’t know what they’ve been fighting, but they’re winning the battle because his temperature has come right down. I’m relieved. He’s had fevers before but nothing as bad as that.

“One of the things I didn’t want to happen was for him to get epilepsy, and now he has – there’s no cure for Angelman Syndrome, and there’s definitely none for epilepsy. I’m still coming to terms with it.

“I was worried he would have a massive seizure that would kill him.”

Rio, who has two older brothers, is due another routine operation later this month to remove his tonsils and adenoids, which should improve his breathing, and his mum is planning charity activities this year, in particular helping Bluebell Wood Children’s Hospice in North Anston.

“He’s a very special boy,” Gemma said.

 

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