UK

Father ‘Buried Alive’ After Stroke Triggers Rare Locked-In Syndrome

By Tiffany Meier

A 50-year-old man suffered a paralyzing brainstem stroke and has been locked in a “living nightmare” after a rare syndrome left him “buried alive” and only able to communicate with his eyes.

Two years ago, in April 2017, Darren Leith suffered a stroke that left him paralyzed. He was rushed to the Intensive Care Unit of a local hospital in England. When he woke, he was unable to move anything apart from his eyes, according to The Mirror.

“We are absolutely heartbroken,” daughter Shannon Leith told The Mirror. “He is paralyzed and can’t talk at all. It’s incurable. It’s likely he will be like this forever.”

He was diagnosed with locked-in syndrome, a rare condition that leaves patients feeling “buried alive.”

“Only 1% of stroke victims are left with this condition,” a specialist told the family, according to the family’s GoFundMe campaign.

Locked-in syndrome is “a rare neurological disorder in which there is complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes,” according to the National Organization for Rare Disorders (NORD). While patients with the condition are conscious and awake, they have no motor abilities. Despite all this, they do have one last resort to communicate through eye movements and blinking.

“I was in complete denial,” his daughter, 23, told The Mirror. “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.”

Because of the severity of the condition, the doctors offered him a “Do Not Resuscitate” order. However, Leith said “no” by looking down. “He wanted to fight it, so we’re fighting it with him,” the family say on their GoFundMe campaign page.

Since 2017, Leith has been 100 miles away from his family in a neuro-rehabilitation center. The last time Leith’s daughter visited him, she said he spelled out five words by using his eyes to point to letters on a board.

“The last time I went to see him with my sister he said ‘take me home you two,'” she said. “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.”

She said the family has started a fundraiser in hopes of raising enough money to buy a place where they can all live together, according to the GoFundMe.

“All we want is for him to be happy,” she said. “The most important thing for us is to make sure his life can be a little bit better.”

The family said while they have found a suitable place that would accommodate all their needs, “we will still need funds for adaptations, renovations and equipment for him to use.”

“I want my dad home now,” Leith told The Mirror. “I know he will be better off at home. It’s not fair to have him here for two years.”

She said, “To have him taken away from us was the worst thing. We just want our dad back.”

She told The Mirror that she knows he’s happiest when he’s surrounded by family.

“When we go to visit him he smiles and is happy. But he does cry a lot when he’s alone,” she said.