A man was robbed of his ability to walk just two years after he spotted the first symptoms on his honeymoon.
Jonny Butcher, 29, didn't have any signs of the disease until a shooting pain in his left shoulder while on honeymoon in the Cotswolds, which he put down to a trapped nerve.
Tests revealed he had amyotrophic lateral sclerosis (ALS), a form of motor neurone disease (MND), in February this year. By that time, he was no longer able to walk unaided and now uses a wheelchair.
Jonny, a former insurance broker from Norwich, Norfolk, said: "On the first night of the honeymoon, I felt a pain in my shoulder, but I rested it and the pain went away. A few months later, I was getting tremors, and the tremors became more frequent as my coordination started to go.
"A month after I was diagnosed, I was no longer able to walk, even using a walking stick. Before my diagnosis, I had it in my mind that maybe I would regain my bodily functions and get better.
"After the diagnosis, it hit me very hard - realising that it won't get better, and will in fact get worse. It's scary not knowing what function I might lose next."
Ana and Jonny met in March 2023 on the Mormon dating app Mutual, despite Ana being in Brazil and Jonny in the UK. He visited her later that year, and the following year, she came across to stay with him in Norwich for 90 days.
She moved to the UK in June 2024, and Jonny proposed - with the couple marrying on September 7, 2024. But just two days after walking down the aisle, when they went on their honeymoon, Jonny noticed his shoulder pain.
Ana said: "MND was the last thing we wanted it to be. Getting the news was like the floor opening beneath my feet, and we fell into a very dark hole. But Jonny's positivity helps. He is so positive and never complains."
In January 2025, the couple moved into a new flat together and he noticed tremors in his left hand, which got worse when he was tired. They were put down to the stress of moving - but by the April, it was more serious.
He said: "The tremors became more frequent and I lost more strength in my left side. My coordination started to go too. I remember playing football with friends, and I was almost tripping over my own feet."
He went to the doctors and was referred for a spinal MRI scan, which was clear, then a brain scan, which also came back clear. But they knew something wasn't right.
Jonny said: "I said that my uncle had MND and perhaps there could be a link. At this point, the doctors thought I had functional neurological disorder (FND), and they gave me a physio who I did routines with - but it kept getting worse."
In the end, the couple went for a private test to diagnose MND as they were unable to get it on the NHS, costing them £3,000. These confirmed, in February 2026, that Jonny did have MND, which was progressing rapidly.
He has begun using a breathing machine for a short period of time each day in anticipation of his lungs becoming worse, after a recent respiratory test showed a drop in his lung capacity. Jonny has been told he is at stage three of five in his MND progression - five meaning he would have less than 12 months to live.
The couple are now working their way through his bucket list - and they have already gone back to Ana's hometown in Brazil to see her family, met all the Norwich City FC players, and booked a romantic trip to Lake Como, Italy, for July. Ana said: "It really is the cruellest disease.
"Your mind stays the same, but your body just fades away. It's so torturous to see my husband deteriorate every day.
"He's slipping through my fingers, and I can't do anything to hold onto him. I can't imagine doing life without him."
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