LITTLE Rio Vicary is almost completely blind, and will probably never be able to walk or talk.
But the 13-month-old, whose short life has already been packed with hospital appointments, could enjoy a special sensory room, filled with toys, vivid colours and smells to stimulate his senses.
Mum Gemma Wright, aged 27, who has started fundraising, said the room would be ‘absolutely brilliant’ for her son.
“This year Rio’s just been in and out of hospital,” said Gemma, from Halfway, Sheffield.
“He needs something other than a hospital bed to explore, somewhere that’s nice.”
Rio suffers Angelman syndrome, a rare genetic chromosome disorder that affects around one in 25,000 new babies. It causes severe learning difficulties, movement problems and epilepsy in 90 per cent of cases.
“When he was first born we knew something wasn’t quite right, but we were not sure what,” said Gemma.
“He had his first operation at two weeks, and came home four weeks after that.”
Rio, who also has albinism, which is unrelated to the disorder and causes his blindness, was diagnosed with Angelman’s at 16 weeks old.
He had a health scare in his first few weeks of life, when he stopped breathing while being fed.
“I was feeding him when I saw his head was completely blue,” said Gemma.
“I was screaming - if it wasn’t for the 999 operator telling me how to bring him back to life I wouldn’t have been able to do it.”
Gemma cares for Rio full-time along with partner Wayne Vicary, 41, who gave up his job as a roads contractor to look after his son.
Rio’s brother and sister Cody, seven, and Jadyn, four, are both unaffected by Angelman’s.
Gemma added: “It’s a big thing having a baby with all these problems, but he’s such a happy little boy.”
The family needs to raise around £5,000 to pay for Rio’s sensory room, and a charity event is being held at Hillsborough Stadium on April 28 to help collect funds.
US doctors are set to begin human clinical trials to find an effective treatment for Angelman syndrome.
Gemma said Rio is not old enough to take part yet, but she is keen for him to be involved at the first opportunity.
The charity event will feature live entertainment, an auction and raffle. Prizes include tickets to see One Direction.
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