A young Powys man is struggling to find a home in the county after suffering through two extremely rare conditions that left him in a coma.

Lenny Connell-Owen, 18, is currently in Hereford Hospital, after suffering the effects of two conditions that affect only a handful of people in the world.

While Powys County Council seeks a suitable home, his hospital stay is costing the authority £500 a day.

Lenny has both Weston-Hurst Syndrome and Marburg variation of Multiple Sclerosis which left him fighting for his life and temporarily paralysed earlier this year.

“Western Hurst Syndrome has only been diagnosed with about 100 people ever,” said Lenny's mum Emma. “It affects the blood vessels in the brain.

“Marburg variation of MS eats the white matter in the brain and leads to paralysis.

“It all started on Feb 25, he had a very severe headache and then he started being sick and his right-hand side started twitching.”


Lenny was rushed to intensive care in Birmingham where he went underwent plasma exchanges, four days of chemotherapy, sepsis, a blood transfusion, and a platelet transfusion.

“He had to have a tracheotomy to help him breathe as he couldn’t be brought out of a coma," Emma added. 

“At one point there were 13 different lines going into his body.”

Emma has been sleeping beside him on a blow-up bed since early April when he was moved to Hereford Hospital.

“I have to be there to help him,” said Emma. “He is also autistic and so finds the surroundings very difficult.

"It also means he won’t eat hospital food and I have to go get him something which means he is losing weight, he is down to just six stone.

“It’s meant I have barely seen my younger daughter.”

Lenny has been deemed fit to return home, and his brother walked Offa’s Dyke to raise money for his care.

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But the family's off-grid home is unsuitable for his needs, and Emma is now urging Powys County Council to help find a home in the Presteigne area nearer to family and acute hospitals, with wheelchair access and a walk-in shower.

“He is improving every day. Before this he was active he liked being outdoors loved dogs and going on his push bike,” said Emma.

“It’s costing the council £3,500 a week to keep him there at the moment. I understand there isn’t a lot of housing but this is good for no one. It’s blocking the bed at the hospital, it’s costing the council £500 a day and it’s really affecting Lenny’s mental health.

“I just want them to think of a way around this. We can do something temporary. I mean even holiday accommodation is only £590 a week.”

A spokesperson for Powys County Council said: “Our Housing Services professionals work closely with people in Powys who are looking for a home, to help them find the best housing option for their situation.

"To respect the privacy of residents and their homes, the council does not comment on individual circumstances.”