'Every day is a real bonus'

Now, nearly on a year on, he is doing better than predicted and his parents have praised an Oxford charity for helping them through the dark days.

Having suffered oxygen deprivation at birth, Kye was on life support for the first 12 hours of his life and has brain stem damage causing cerebral palsy and epilepsy.

He cannot hold himself up, and needs 24-hour care.

From early brain scans doctors said he would not live past two days, so his parents Sarah and John Sammons, of Ambrosden, Bicester, made the most of their time with him and had him baptised in hospital.

Later, tests showed he would probably be deaf and blind and would not feed without tubes, but since then Kye has proved everyone wrong.

His parents had hearing and sight tests done showing Kye can hear perfectly and can see partially as well. They have also recently started feeding him solids.

Rosy - Respite Nursing for Oxfordshire's Sick Youngsters - supports Oxfordshire families with very ill children, and their nurses visit twice a week to relieve full-time mum and carer Mrs Sammons for a few hours.

Mrs Sammons said: "It was hard at first but now he's 10 months old and is our life.

"I cannot do anything as simple as going to Tesco's because he cannot sit up in the trolley.

"Having help from Rosy gives me someone to chat to and have a cup of tea with. They tell me what I'm doing right and wrong and put my mind at rest."

Mr Sammons said: "Every day is a real bonus. You've got two choices: to hide away or get on with life. We would not be here without the nurses."

His wife said it had been a 'roller-coaster ride' from the beginning, but they had kept going even when people gave them the worst news.

She added: "We have been told from the word go that he would not talk and he would be a vegetable, but now we get a little bit of kicking from him and it's really nice just hearing him making sounds.

"While we have managed to prove the doctors wrong with most of Kye's prognosis we do know there will be things like walking and talking that he is unable to do.

"But we try and remain positive and take each day as it comes. Any small improvement is a major one to us."

Mrs Sammons said all the medical staff who had helped had been great. Despite all the challenges facing him Kye keeps surprising everyone. On a recent family holiday in Cornwall, he was kicking around in the swimming pool like any other baby.

Around 400 children in the UK are born with Kye's condition, which can be caused by an illness during pregnancy or shortly after birth.

There is no cure, but the right treatment can ease the effects as children grow up.

Firefighters go the distance

Oxfordshire firefighters were welcomed back on Saturday after a 200-mile round trip bike ride to Brighton to raise money for Rosy, the charity which has helped little Kye.

Kye and his parents were among the crowd of friends and family gathered outside The Slade fire station in Oxford to greet the 12 cyclists riding the last leg of their journey down Horspath Driftway.

They tackled the 15-hour trek over two days in aid of Rosy, the respite care charity which looks after Kye and other Oxfordshire children. Rosy chairman George Hedges said: "These lads are heroes, doing something like this for other people."

Firefighter Chris Smith, who organised the event, said: "The best bit was riding down and seeing all the people there. Seeing Kye makes it all worthwhile - that is what it's all about."

Kye's dad John said: "I was choked up seeing them come in. They are not doing it because they have got a child like Kye, but just because they want to. It's great."

The crew has raised money for charity before, but this was their toughest challenge yet. They set themselves a £10,000 target, half of which they still need to raise.

Later in the autumn an online auction of donated items will be held on Oxford City Council's website. It will include tickets to see Aston Villa play.