Thomas Hynes, 33, a former IT technician from Grimsby, has been given a prognosis of three to five years after being diagnosed with motor neurone disease (MND). He first noticed pain in his knees and ankle, increased stumbling and difficulty running from September 2022, but dismissed these as a sprained ankle, describing himself as a "typical man".
Wedding day struggles
During his wedding ceremony in June 2023, his wife Jade Hynes, 31, a veterinary nurse from Lincoln, recalled Thomas was unable to "walk around the grounds" of the venue and "struggled" to reach the ground floor bathroom at their accommodation.
From May 2023, Thomas underwent "every test imaginable", including MRI scans, blood tests and lumbar punctures, before being diagnosed with MND on November 22, 2023, aged 31. MND is an incurable, life-shortening condition that causes progressive muscle weakness and rarely affects anyone under 50, according to the NHS.
Progressive decline
Thomas can now only move his neck and toes, requires a breathing device and his voice is "barely intelligible". He gave his responses in writing. He said: "I hope an effective treatment is found soon – if not in time for me, then for the people who will be diagnosed after me. In a perfect world, my dream would simply be to grow old alongside my wife. That is all I want."
Thomas and Jade met in 2013 through a mutual friend and became engaged in 2019. In September 2023, nine months before their wedding, Jade noticed Thomas "struggling to walk" and "tripping over things" because his "foot started to drop", so she encouraged him to visit his GP. Thomas said: "I was a very typical man about my symptoms – I ignored them for as long as possible until my wife eventually forced me to go. The turning point came when we were walking our dog on the beach and I realised I couldn't run, no matter how hard I tried."
Diagnosis and impact
At a GP appointment in May 2023, his doctor thought it might be a muscular issue, so Thomas underwent physiotherapy, but things "kept getting worse". By their wedding in June 2023, Jade said Thomas was not "able to walk around the grounds" of the venue and it was "quite difficult to watch him struggle". Thomas was referred to another doctor in July, who suspected a compressed nerve in his back, before seeing a spinal specialist in August. On October 6, a neuromuscular doctor told Thomas he may have MND.
"I remember my wife breaking down in that tiny doctor's office and I wrapped her in my arms as she cried," Thomas explained. "I don't think the news really hit me at that moment." Over six months, Thomas was sent for around "20 different tests" across three hospitals. "Every single appointment became more anxiety-inducing as it grew clearer that this wasn't a simple fix," he said. "Not having answers was excruciating and I felt completely helpless as the tests kept piling up."
Doctors confirmed MND on November 22, 2023, giving a "typical" prognosis of three to five years. At the time, Thomas and Jade had been married for five months and were "actively trying to have a family". He said: "I know it sounds cliché, but time truly slowed down, and his voice faded into a muffle. I just broke. It is an indescribable feeling to be told that you are going to die and that you will suffer every step of the way."
Living with MND
Jade reduced her hours at work "straight away" because Thomas had "severe anxiety attacks" immediately after his diagnosis. Since then, doctors have focused on managing his symptoms. "Every stage of this illness is a new mountain to climb," Thomas said. "It is painful, terrifying, and humiliating all at once. You think things surely can't get worse, but somehow they do."
Thomas's movement is now limited to wiggling his toes and moving his neck, and he can no longer speak. "My home is filled with medical equipment now: a machine to help me breathe, one to assist with coughing, a ceiling hoist, and an eye-gaze computer," he added. "The list goes on, and every single item is essential for basic survival and communication."
Jade, who also has a rare chronic autoimmune disorder called Evans syndrome, reduced her work hours to once a week from summer 2025 and started a baking business. To help make ends meet and buy an accessible mobility van, Thomas "cashed out" his pension early. The couple have set up a GoFundMe for bills, specialist equipment and creating "as many meaningful memories together as possible". Thomas said: "It offers us a chance to focus on living rather than just surviving."
