A 33-year-old man is sharing his story to increase understanding of Motor Neurone Disease, after losing the ability to walk, move his arms, and breathe independently within two years.
Tom Hynes was diagnosed with ‘terminal Amyotrophic lateral sclerosis (ALS)’ in November 2023, when he was 31.
A little more than two years on, he says that even though he’s ‘fighting’ the condition ‘as hard’ as he can, he has turned to GoFundMe to explain that he is ‘losing’.
Since being diagnosed, Tom says he can no longer walk or use his arms and cannot ‘even breathe unaided,’ describing the speed of his decline as ‘truly terrifying’.
Despite the reality of the prognosis, he says he doesn’t want to ‘just give up.’ Instead, he remains ‘stubbornly fighting’ and has been using social media to draw attention to ALS, including talking about an early symptom he noticed before doctors confirmed the disease.
In a post on the Reddit thread ‘r/AMA’ on February 17, Tom introduced himself and explained that his condition has left him ‘nearly completely locked in.’ He encouraged readers to ‘ask [him] literally anything’ in the hope that more conversation will lead to more awareness.
Amyotrophic lateral sclerosis (ALS) is ‘a nervous system disease that affects nerve cells in the brain and spinal cord,’ according to Mayo Clinic.
It is also the most common type of motor neurone disease (MND).
“ALS causes loss of muscle control. The disease gets worse over time,” it adds. “ALS often begins with muscle twitching and weakness in an arm or leg, trouble swallowing or slurred speech. Eventually ALS affects control of the muscles needed to move, speak, eat and breathe. There is no cure for this fatal disease.”
During the AMA, one user asked Tom: “I guess I’ll be ‘that guy’: what were the initial symptoms?”
Tom replied: “I knew it was coming but I’m happy to answer that guy. So for me it all started with a pain in the knee and falling over a lot, I thought I had just hurt my foot and well here we are. it’s all on my profile if you want the full story.”
Tom has also shared more detail on a GoFundMe page, hoping to raise money for support for himself and his partner Jade, who has had to ‘significantly reduce her hours at work to care for [him] at home’.
On the fundraising page, he describes how, only six months after his formal diagnosis, he could ‘barely walk three steps’.
He also outlines the ‘massive strain’ the illness has placed on his physical health and mental wellbeing, as well as the financial security of his family—particularly during a wider cost of living crisis.
You can donate to Tom’s fundraiser here.
Tom wrote: “Money kindly donated so far has helped to buy essential equipment and fund some unforgettable day trips to make as many memories as possible, but to help unload some of the worry and pay for less exciting but necessary things such as my funeral.”
He added: “We ask for any help you can provide, even if it is just sharing our page amongst your friends, family, and colleagues.
“We would like to take this opportunity to thank you.”