NEED TO KNOW
Gareth Bayley had a stroke in his brain stem when he was 38 — triggering locked-in syndrome, a devastating condition that his wife Karen explains as being “trapped in his own body”
Those with locked-in syndrome are fully mentally present but usually can’t move or speak; Gareth has regained limited movement
Karen is now raising money for an innovative stationary bike that could help him progress even further: “The goal is to have him back home again,” she says
A young father of two’s devastating stroke led to locked-in syndrome — a heartbreaking condition where you’re conscious, but can’t move — but his wife says there may be a treatment that can help him regain his “independence and dignity.”
Gareth Bayley was just 38 when, in April 2022, he began to struggle with headaches every day for a week. The construction professional, who hails from the London suburb of Bexley, chalked it up to stress — but then he called his wife, Karen, to share that he didn’t feel well. She hurried to his job, where she’d learned he’d collapsed and had a seizure, according to Daily Mail.
Karen Bayley / SWNS
Gareth and Karen Bayley pose with their children on their wedding day in 2015.
Gareth continued to have seizures on the way to the hospital, where the next day, doctors confirmed he’d had a stroke in his brain stem. It triggered locked-in syndrome, a devastating condition where someone is fully conscious, but cannot move or speak. It’s rare, but as the Stroke Association explains, it’s usually caused by a stroke in the brain stem.
“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. Doctors told us he would likely never move again, apart from slight eye movements,” Karen said.
“Gareth is a fighter,” she continued. “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.”
That progress has been encouraging, Karen explains, and inspired them to raise money for a functional electrical stimulation (FES) bike. It’s a personalized stationary bike that sends electrical impulses to paralyzed muscles to help them regain function, per the Christopher and Dana Reeve Foundation.
“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.’ But to us, it is essential. If I can get him this bike, it will be amazing,” said Karen, who is raising money to purchase the bike via GoFundMe. On the fundraiser, she explains, “Gareth is a fighter. He has regained some head 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 … Every day, Gareth wakes up determined to keep fighting.”
Karen Bayley / SWNS
Gareth Bayley with his children, Brooke and Jesse.
Karen, who shares children Brooke and Jesse with Gareth, explained further that “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,” per Daily Mail. “It could give Gareth the best possible chance at further recovery, independence, and dignity.”
Although he’s currently in a care home, “My husband has expressed that he wants to come home and be with me and the children again,” she said. “The goal is to have him back home again.”
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