'I noticed changes to my voice before devastating diagnosis, aged 29, but rugby community has been amazing'
Tom Davies was a talented rugby player who had recently completed his PhD and secured his dream job, when his world changed forever.
Aged just 29, he was diagnosed with motor neurone disease (MND), the same condition which tragically claimed the life of rugby league star Rob Burrow.
The rugby community has rallied round to support Tom, who grew up in Birmingham but has lived in Sheffield since coming to the city as a student 12 years ago, and players are preparing to compete for the inaugural Tom Davies Cup as part of a fundraising day this April.
Tom has explained how he first noticed something was wrong, his reaction to the ‘devastating’ diagnosis, and how grateful he is for the support he has received as the disease progresses.
Tom began playing rugby for his local club in Sutton Coldfield before leaving home in 2013 to study biochemistry at the University of Sheffield.
‘I first noticed changes to my voice’
“I enjoyed it there so much that after I finished my degree in 2017, I decided to stay on and do a PhD for another four years!” he said.
At university, Tom played for the Sheffield Medics rugby team and after completing his PhD in 2022 he secured his ‘ideal’ job working for an environmental consultancy, advising businesses on how to reduce their carbon footprint.
He began playing rugby for Hallamshire RUFC and everything seemed to be going well until life took a cruel twist.
“I first noticed changes to my voice around 18 months ago, followed by a weakening in my hands a few months later,” said Tom.
“My partner Alex encouraged me to see a neurologist and I was eventually diagnosed with MND in July last year.”
‘The diagnosis was pretty devastating’
“The diagnosis was pretty devastating. It's not something I was expecting as MND is rare, especially under the age of 50 and I was only 29,” said Tom.
“Since my diagnosis the condition has continued to progress; I find walking difficult now, my hands and arms have got weaker, and I now have a PEG feeding tube as eating can be challenging.
“It's a bit of a game of constantly trying to adapt as things continue to change while managing immense uncertainty.
“Despite all the challenges though I'm still enjoying life and doing as many fun and fulfilling things as I can.”
‘I’m lucky to be supported by so many amazing people’
“I'm very lucky to be supported by so many amazing people - Alex especially has been incredible,” added Tom.
“Both our families and all of our friends have been so supportive and kind, and the Motor Neurone Disease Association (MNDA) has also provided so much practical, financial and emotional support.
“I'm honestly quite overwhelmed by how much all the rugby clubs have rallied round. Right from when I was first diagnosed they started to plan for this big fundraising day of rugby, as well as other fundraisers throughout the year.
“All the players and people involved at the different clubs are so enthusiastic to help. I'm so incredibly grateful for everything they've done to try and raise money, and also to create a really fun, inspiring event. It's going to be a fantastic day and I'm looking forward to it immensely!"
‘There’s a brotherhood in rugby’
The Tom Davies Cup is due to take place on Saturday, April 26 on Hallamshire RUFC’s pitch at Bolehills, Crookes, with his two former clubs joining forces to show their support for Tom and raise money.
Anyone is welcome to attend the fundraising event, at which there will be a charity raffle, with the clubhouse selling drinks and a pizza van on site.
Motor neurone disease (MND) is a neurological condition causing muscle weakness which gets progressively worse.
It’s usually life-shortening and there’s no cure, though treatment can help to manage the symptoms.
Anyone can get MND, but it usually affects people over the age of 50.
Initial symptoms may include:
- stiff or weak hands, which cause problems holding or gripping things
- weak legs and feet, which may make climbing stairs difficult and cause you to trip over a lot
- twitches, spasms or muscle cramps
As MND gets worse, you may:
- have problems breathing, swallowing and speaking
- produce a lot of saliva (drool)
- have changes in your mood and personality
- be unable to walk or move
Hallamshire RUFC have appealed to businesses to provide prizes for the raffle, with club president Sam Rigby saying all money raised on the day will go directly to Tom, while money donated via the JustGiving page will be split between the South Yorkshire Branch of the MNDA and the national charity.
“Tom was always one of the top performers on the pitch and his fitness and ability was amazing,” said Sam.
“Even since his diagnosis, he’s still always smiling and he often comes to watch us play. There’s a brotherhood in rugby and we’ve all rallied behind him.”
Tom’s partner, Alex, said he is ‘genuinely the most wonderful person I’ve ever met’ and ‘shows immeasurable kindness and compassion to everyone’.
‘MND is a cruel disease but Tom has remained positive’
She added: “MND is a cruel disease and has brought with it enormous challenges. Even since his diagnosis, Tom has remained positive, courageous, and continues to wish the best for everyone around him.
“The MNDA has made a great difference to the lives of Tom and the people closest to him: from providing a listening ear in the darkest times, supplying equipment to enhance Tom's abilities, through to giving advice and awarding grants which allow Tom the best quality of life.
“Tom was always an extremely talented sportsperson, and he now enthusiastically cheers on the rugby teams who he can no longer play for.
“It's incredibly comforting to see how the rugby community and those beyond have gathered around to support Tom and for him to see how very loved he is. I am supremely proud of him and grateful to everyone rooting for him.”
To donate to the JustGiving page, visit: https://www.justgiving.com/page/tom-davies-cup
If you are able to donate a prize for the charity raffle, email: [email protected]
For more information about motor neurone disease, visit: https://www.mndassociation.org/