Paralysed dad-of-three makes desperate five-word plea using eyes to spell words

A father-of-three with locked-in syndrome has pleaded to be allowed to go home by using his eyes to spell out words.

Darren Leith can only communicate using his eyes after being left "buried alive" by an ultra-rare condition following a devastating stroke two years ago.

Former painter and decorator Darren is effectively locked inside his own body.

The 50-year-old knows what is going on around him – able to think, reason and feel – but is unable to move.

He has been cared for at a neuro-rehabilitation centre in Southport – 100 miles away from his loving family home – following the brainstem stroke in April 2017.

Darren, from Barrow, Cumbria, cannot eat with his mouth, talk or move almost every muscle in his body – but has pleaded with his family to take him home.

He spells out words on a board using his eyes to point to letters and, during a recent visit from his heartbroken children, spelt out "take me home".

Daughter Shannon Leith, 23, said: "The last time I went to see him with my sister he said 'take me home you two'.

"We are absolutely heartbroken. He is paralysed and can't talk at all. It's incurable. It's likely he will be like this forever. The signals from his brain to his body are being cut off.

"The doctors told us he will never be able to move again. All he can do is wiggle some of his fingers and lift his head slightly.

"I want my dad home now. I know he will be better off at home. It's not fair to not have him here for two years.

"He is so depressed and wants to be at home. It would be a dream for us. The last two years have been a living nightmare.

"To have him taken away from us was the worst thing. We just want our dad back."

Shannon and the rest of Darren's family, partner Kelly Freshwater, 43, his 11-year-old son, Connor, and eldest daughter, Kirsten, 24, are now desperate to bring him home.

They have launched a fundraising appeal to raise £20,000 to pay for specialist assisted living equipment so they adapt the family home and safely care for Darren themselves.

Shannon says she wants to make sure her dad's tragically limited existence is at least as comfortable and happy as possible, surrounded by loved ones.

Welder Shannon, said: "All we want is for him to be happy. The most important thing for us is to make sure his life can be a little bit better.

"I know he misses home and I know how much he hates being away from his family.

"When we go to visit him he smiles and is happy. But he does cry a lot when he's alone."

Darren had the stroke after waking up and getting out of bed on what was an "average" Friday morning, on April 28 2017.

Two days before he had been to the doctors complaining about a headache, but Shannon claims he was sent home after being told he had a migraine .

He apparently felt unwell all week, and when he woke up on April 28, was slurring his words.

Whilst he was getting ready for work Darren collapsed by his bedside, and Kelly dialed 999.

Darren was rushed to Furness General Hospital in Barrow-in-Furness and placed into an induced coma.

Doctors carried out tests to try to find out why Darren had collapsed and managed to rule out a heart attack and other types of strokes.

He was woken from the coma on April 31, but was unable to move and could only blink.

A neurologist was called to assess unresponsive Darren, who was able to confirm he had suffered a brain stem stroke and was now locked in to his own body.

Shannon says the specialist told Darren's family only 1% of people who have a stroke develop locked-in syndrome.

Shannon said: "He told us he was completely paralysed but can 100% understand everything we say.

"I was in complete denial. It was just awful to be told that. We were told it is incurable and dad will be like this forever.

"I struggled to cope to begin with. It was absolutely horrible.

"I laid in bed and just tried to imagine what it would be like for him. It must be a living nightmare. It's like being buried alive.

"I hang on to hope that he will get better one day. I have been a mess since it all happened."

Before suffering his stroke Darren was an active, happy-go-lucky fitness enthusiast who had a passion for kayaking.

He was a "lovely dad", according to Shannon, who says it feels as though the roles have been reversed and she is now caring for her dad, like he has cared for his children.

Locked-in Syndrome is a rare motor disability that occurs mostly when a part of the brain stem, known as the pons, is damaged, and ultimately causes paralysis in all voluntary movement.

People who develop locked-in syndrome are conscious and awake, but have no ability to produce movements.

It is extremely rare, and those who develop the syndrome often never recover, although some have been known to regain the partial ability to move with years of physiotherapy treatment.

Darren spent the first eight months of his care in hospital and was moved to Cleveland House in December 2017, which is a two hour drive away from his family.

He receives one-to-one physiotherapy at the centre and has fought hard to regain his muscle strength.

He can now wiggle some of his fingers, can lift his head from his pillow and has recently learnt how to communicate in sentences using his eyes.

Physio also includes encouraging Darren to write on a white board and stand using a tilt table, with specialists hoping his muscles will begin to remember how to move again.

Shannon said: "We do still have hope because we were told he would never move again at all.

"He's trying to get stronger and stronger all the time and he is making progress. But he does best when he's with us. He gets strength from spending time with his family.

"If he is with us all the time, we can spend much longer trying to help him.

"We can give him the encouragement he needs."

To visit the fundraising page set up for Darren, head to

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