'I told Corrie stars I'll show world you can have a terminal illness but lead happy life'

When Sam Hayden-Harler was diagnosed with motor neurone disease he said the condition would not stop him living life to the full.

The young dad’s diagnosis mirrors the current Coronation Street plot in which Paul Foreman is told he has the terminal condition in his 30s. But while Paul has stuggled to deal with his condition, Sam has taken his diagnosis as the cue to make the very best of every day, creating a bucket list of 100 things he wants to experience – including a visit to the Coronation Street set to meet the cast

“It’s sad it’s taken MND to make me wake up and smell the coffee, but I’ve never lived life as fully as I have done in the last year,” Sam says. “I’ve just come back from a cruise, I walked over the O2, I was an extra on Casualty, I got married and had a family. A friend even organised SamFest, my very own music festival.

“One of the items on my bucket list is to appear on TV to raise awareness of MND, so Coronation Street have kindly arranged for me to go on Good Morning Britain. I appreciate the simple things. I’ve got a roof over my head and food on my table. Yes, my health will decline, but I’m living, I’m happy and I’m smiling. Every day I try to look for something positive.”

When TV chiefs heard his story, they invited Sam to the cobbles to meet Peter Ash, who plays Paul, and Daniel Brocklebank, who plays his husband vicar Billy Mayhew. Sam also watched them filming. “Peter had his walking stick for the scene and I was obviously using my walking stick and he asked me about my symptoms,” Sam says.

“I explained how I’m losing the ability to use my hands. I told him he was literally playing my story, my life. Daniel told me he’s a patron of the MND Association and his grandfather had MND, so he’s very passionate about raising awareness. I told them I want to show the world you can have a terminal illness, but still lead a very happy, fulfilled life. They were so supportive.”

Sam had twice run marathons before being diagnosed with MND last year aged only 35. The condition attacks nerves in the brain and spinal cord that control movement. It can leave people locked in their bodies, unable to move, talk, swallow and eventually breathe. MND kills a third of people within a year and more than half within two years of diagnosis. But others live longer – former rugby league player Rob Burrow was diagnosed in 2019.

Sam, 37, first noticed problems in 2021. He struggled to open bottle tops and felt pain in his wrist and hand. His GP sent him to a physio then to a neurologist, who diagnosed MND after tests. “I had an inkling what they were going to tell me,” he recalls. “But still when they said the words, I went numb.”

Sam can no longer tie his shoelaces or hold a pen. He walks with a stick and uses a motorised scooter. He lives in Kent with his stage manager husband James, 41, and their six-year-old son. They and Sam’s parents sold their houses, so they could all live together to care for him. “You adapt and change,” he says.

“I struggle now with the physical act of lifting up a knife, fork and spoon, so I probably feed myself 20% of my meal, but then I’ll get my mum, dad or James to feed me the rest.” Sam hasn’t fully explained the reality of his condition to his son – “he knows Dad isn’t well.”

Sam takes medication but tries to live as normally as he can and works for a loss adjuster. He has even planned his own funeral. “I want to do things my way; I’m even going to record my own eulogy,” he says. “I’m not fearful. Death is inevitable for all of us. I want to squeeze life hard. The body will change but I hope I’ll still be the same person.”

Sam admits Paul’s battle with MND in Corrie can be tough viewing. “It’s difficult to watch what in essence is your story. However it’s important we don’t shy away from it; we need to show the full reality of MND.” Sam, who has set up a fund to raise £50,000 for the MND Association, adds: “It would be very easy just stay indoors, but I don’t want that to be my existence. I want people to know that I didn’t go down without a fight.”

* www.gofundme.com/f/help-sam-fight-motor-neurone-disease-mnd