Tom

Meet Tom...

Tom's brother, Rob, was diagnosed with MND at the age of 24. As his older brother, Tom was determined to make every day count and help his brother achieve his dreams - from travelling to America to watch his favourite ice hockey team to completing the Scouse 5k race in his wheelchair. 

Tom shared his reflections with us in July 2024. Sadly, Rob died in November 2023 but Tom is passionate about keeping his story alive to help others feel less alone. In 2024, Tom requested the Mersey Gateway be lit up in MND Association colours raising awareness and celebrating Rob's legacy.

My brother Rob...

"Rob was 24 when he was diagnosed. When I look at photos of him then all I can think about is just how young he looked, he had his whole life ahead of him and then was given just two years to live. 

He managed to fight it for six and a half years though. He was a warrior and never complained, even when he was totally dependent on a team of carers to do every day things. If you wanted to just go out to the shops Rob couldn’t get up and go like most of us. 

It took about an hour to get Rob dressed and ready, hoisted into his chair, and wrapped up warm. Even then you had to put his arm and hand into the controls so they were just right and he could steer his chair which he wasn’t always able to do. He was so vulnerable and couldn’t even leave the house by himself towards the end. 

He wanted to study computing at university and be a games programmer, he actually taught coding at one point as well as being an archery coach – until he couldn’t pick up a bow anymore. 

Rob was always into something new and exciting, he would turn his hand to anything, photography, kickboxing, archery. Even when he was living with MND I remember taking him to play disabled ice hockey at the rink. He was on a sled and kept falling over but he would get himself right back up. He was a fighter. 

He even managed to go to Pittsburgh with carers and see and meet his favourite ice hockey team the Pittsburgh Penguins, he was obsessed with them, and we would watch the games together. I’m glad I spent that time with him and bonded with him sending each other ice hockey teams. 

If you knew Rob, you knew he loved Amazon. Once, he got me a box of 50 Crème Eggs from there – he was always ordering something from there. He would buy his carers gifts and they weren’t just pointless things. He always put thought into them, and they meant something. One of his carers lost her dad and he bought her a musical box that played her favourite song for example. I would always ask him, ‘how many orders are you on this year mate?’ and the answer was usually above 250. It was his way of going to the shops without leaving the house. 

When Rob was diagnosed none of us had even heard of MND or knew what it did. He made it his mission to raise awareness, we all did. He did the Silence Speaks fundraising challenge, a gaming marathon. He did the scouse 5k in a wheelchair being pushed by his friend even when a wheel fell off. His Twitter feed is full of MND awareness tweets and retweets. Even in the hospital he wanted to speak to Kev Sinfield the England rugby coach he said to ‘thank him for all the awareness he has raised for MND.’

I think Rob thought I could move mountains for him if he asked, all I did really was try to ask the right person for something. I got him a birthday message from his favourite singer Newton Faulkner. We even got to meet him thanks to the Willow Foundation. We met his favourite rugby team the Widnes Vikings and were treated to a tour of the stadium from Patrick Ah Van, his favourite player. Pat even came to see Rob in the hospital and came to his funeral too. Towards the end Rob had a final request. He wanted to be on a fire engine hearse. He never did like to make things easy for me! He got his hearse, and he got another fire engine with a 

full crew there as a mark of respect with their lights on and a guard of honour from them. 

The truth is, I just wanted to do my best to make things happen for him, so I would pester people or ring or email who I thought might be the best person to get something for him. I learned a lot about different charities and the grants he could get. He was offered a grant for a holiday by Challenging MND, but sadly, he couldn’t go on that holiday. 

I never thought people could get MND this young. It’s a cruel disease with no cure in sight and doesn’t have the awareness it needs. I decided to put in a request with the Mersey Gateway via their website to see if they could light the bridge up in the MND colours for him. I thought maybe if people see it lit up, they might google what it was for and then learn about MND. 

I want the whole world to know about MND and what it does. More funding needs to be given to finding a cure and more awareness is key to that. Rob was holding out for a cure, he wanted to live and since he’s been gone, I feel like it’s my mission now to fight against MND. I’m really angry at it, it took my brother and there was nothing I or anybody else could do to even slow it down. 

Rob was the best of us. MND doesn’t discriminate, it doesn’t care if you’re a good person or if you’re young or old. 

I miss him every day and I think about him all the time. I think time for Rob was different, living with a terminal illness gave him a different view on life. ‘Live your dream’ that’s what the cross he wore said. He didn’t want to waste what time he had left I think that philosophy can be a lesson to the rest of us, to just slow down and appreciate things in life because we only get one shot at it."