Man, 38, living with ‘locked-in syndrome’ after week-long headache turned sinister
The family of a father-of-two has told how he can no longer 'speak or move' after a stroke left him with locked-in syndrome.
Gareth Bayley, 38, had endured an intense headache for about a week before his life changed in April 2022.
He first blamed the pain on stress, but realized something was wrong when he began feeling unwell at work.
The builder from Bexley, southeast London, called his wife Karen to pick him up; she arrived to find Gareth had collapsed and suffered a seizure.
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He continued to fit after arriving at a nearby hospital, and doctors realised the following day that he'd had a stroke.
Gareth—described by his wife as the 'life and soul of the party'—suffered a brain stem stroke, which affects the part of the brain that connects to the spinal cord and controls vital functions.
This includes heart rate, breathing, blood pressure, and the nerves and muscles used in seeing, hearing, walking, talking, and eating, according to the National Cancer Institute.
As a result of the stroke, Gareth was left with locked-in syndrome - meaning he is conscious, but unable to move or communicate verbally, except via eye movements.
"It’s been completely life-changing - he was 38 and I didn’t associate a stroke with someone that age," Karen said. "But you don’t know what can happen overnight, it’s turned our world upside down."
Although doctors told Karen and her children that the builder would probably be completely paralysed for the rest of his life, his wife says he has 'defied every single expectation'.
She explained that since being diagnosed with the rare neurological condition three years ago, he has managed to regain small but significant functions, such as the ability to make facial expressions.
Gareth remains mentally alert and can communicate with his nearest and dearest via blinking, spelling out words one letter at a time.
Karen said of her 'one in a million' husband: "He is still him - he’s fully there and remembers everything. It’s just he can’t speak or move. It’s like he’s trapped in his own body. But Gareth is a fighter. Over the past three years, he has regained some movement: he smiles, he laughs, and his expressions have returned in ways we were told might never happen.
"Every small step forward has given us hope that more recovery is possible."
Karen and her two children are now hoping to raise £35,000 to purchase life-changing medical equipment for Gareth, which could help him regain vital movement.
The family have got their eyes on an 'amazing' Functional Electrical Stimulation Bike for the dad, which uses electrical pulses to stimulate paralysed muscles.
It is hoped that this could encourage his arms and legs to move together - but it can only be sourced in the US and comes with quite the hefty price tag, and according to Karen, the bike would give Gareth the 'best possible chance at further recovery, independence, and dignity'.
"We did try to get it funded as he is in a care home, but because it was so expensive, the funding got refused as it wasn’t deemed an 'essential piece of equipment'," she explained. "But to us it is essential. If I can get him this bike it will be amazing.
"It would help increase his muscle strength, prevent pressure sores, improve the movement range with his arms and legs, help his joint mobility, and help his muscle spasms."
Gareth has been residing in hospitals, rehab centres, and care homes since his stroke in 2022, but his wife hopes getting the bike could be a crucial step in bringing the builder back where he belongs.
"My husband has expressed that he wants to come home and be with me and the children again," she continued. "But it’s the case of getting the equipment. He has physio once a week in his care home, and they’ve said if we can get the equipment, I can have training.
"The goal is then to have him back home again."
She said the response to her fundraising efforts has been 'fantastic' so far, as well as 'a little overwhelming', adding: "People who don’t even know me or my husband have donated money and been so generous."
To find out more about the family's GoFundMe, click here.
Olivia Burke