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“My heart has shattered into a million pieces and we will never get over him.”

Liam Barker, from Middlesbrough , defied the odds when he was born seven weeks premature on December 29, 1993.

He wasn’t expected to survive longer than 24 hours but he made it over the first hurdle and at five weeks old he was diagnosed with centronuclear myopathy - a condition so rare he was thought to be the only person in the UK who had it.

The condition affects one in 10 million boys and Liam had the most severe form meaning he was ventilated from birth.

Sadly Liam, 22, died suddenly on Thursday and his parents Michelle and Phil are waiting on the results of a post-mortem examination to find out how.

Liam needed 24-hour care and for the past 22 years his parents have devoted every waking moment to be by his side so to be suddenly without him is a pain they can hardly bear.

“Everyone keeps saying we have got our memories but I’m greedy, I want him back here,” said Michelle, 48, from Linthorpe .

“I never wanted this day to come and now it has I can’t cope, I don’t know what I’m supposed to do without him.

“It’s like we have been on a train at 100mph for nearly 23 years.

“He has been our life, he is our world and it’s like we have been de-railed and everything has come to a stop.”

Liam could only communicate by smiling and blinking but would pucker up for a kiss from his family.

“He was very tactile, he loved being tickled and stroked,” said Michelle.

“He liked his massages and he liked you to read to him.

“We have a big box of postcards which we would get from wherever we went and anyone who knew him would send him them and he liked to look at them while I talked to him about the different places.

Phil, 56, who has two older daughters from his first marriage, Claire, 30, and Kaley, 28, as well as 16-year-old Britney with Michelle, said: “He loved his music, he’d listen to all the chart music. He loved his headphones on.

“He used to kick off if he didn’t like a song and his heart rate would shoot up and you’d have to skip it.

“I keep going in his room and saying ‘Morning Liam’, I can’t believe he’s not here.”

Although Liam had suffered infections in the past, he hadn’t been hospitalised in the past three years.

“He was really well and on the Tuesday we took him up Redcar Beacon in his wheelchair,” he said.

Michelle added: “If I’d known that was going to be the last time I’d get a photo of him I’d have taken some of all of us together.”

The family wants to thank their relatives and friends for all their support and all the medics who have cared for him including the consultants and nurses at Middlesbrough’s James Cook University Hospital, especially Dr Wyllie, as well as his home carers and physio team.

A funeral date for Liam has not yet been arranged but the family has asked for all those who attend to wear bright colours and avoid black.

Michelle’s sister Clare Dunkerley has set up a gofundme page to help the family towards funeral costs. It can be found HERE .

“His parents fought so hard to get Liam home, and have never once thought about themselves since the day he was born,” said Clare.

“They have both dedicated their lives, along with Britney, to caring for and loving Liam with every inch of their heart and body.

“We just want to take some of the pressure away from them and help them get their beautiful boy the funeral he deserves.”