Kat Jones has never been a runner… in fact, she says she’d often cancel gym classes if she knew they’d include any form of running.
However, in April 2025, she’ll be taking on the London Marathon in aid of us. Her motivation? Her incredible children, Tyler, 11, and Eryn, 8.
Both children are living with hereditary spastic paraplegia (Type 5a) which affects their mobility and means they often can’t walk unaided.
We’ve supported the whole family on one of our Child and Family Weeks previously, which Kat says was much-needed by all of them – and a time for both children to enjoy themselves away from their day-to-day routine.
Here, Kat, who works in Prevention with Devon and Somerset FRS and was previously a firefighter with LFB, shares why she’s taking on the mammoth run as a thank you for the support:
“Tyler was born in 2013, it was a normal pregnancy and no concerns. It was only when he started missing key milestones like walking when we realised something was wrong,” says Kat.
“After four years of testing – which were a total roller coaster as they kept telling us possibilities of what he might have, some of which didn’t have him living past seven – we found out in 2020 that he had one of the rarest types of Hereditary Spastic Paraplegia, called Type 5a.
“Not long after his diagnosis, at the age of six, his little sister Eryn was diagnosed with the same disorder. Eryn is now seven and is dependent on a wheelchair/carries on longer walks and days out.
“So far, we have found 79 people worldwide, and only five people in the UK with this condition – and that number includes Tyler and Eryn. In fact, they are still the youngest to have been diagnosed.
“At the moment we are trying to keep the children as active as possible, despite them only being able to use their legs for limited amounts of time, because of we don’t keep them active they will succumb to wheelchairs a lot sooner.
“Tyler already uses a walking frame and wheelchair whilst Eryn just uses a wheelchair or has lots of carries when she is tired.”
Kat adds: “Tyler has never let his disability get in the way of anything. He will give absolutely anything a go and give it 2,000% in the process. You will never hear him grumble about how he is different to anyone else and often he will put his peers to shame with his sheer determination to get things done and prove that he is capable of joining in.
“Apart from being one of the most humble and positive young men we know, he is also the most amazing role model for his little sister who has watched every curve ball be thrown at him and seen him deal with it so graciously and positively, and for that we are eternally proud of him.
“As his condition has deteriorated, he has lost the ability to run unaided and now can only do it with his walking frame. It breaks me. He loved running around, would take part in school sports days and even if he fell, he would get back up and crack on.
“I was embarrassed that I couldn’t run, and so I’ve told myself that I need to run, I need to run because Tyler can’t… and I need to make him proud.
“So here we are, I’ve been running since October last year. Believe me when I say the mental side of it is harder than the physical side of it. The furthest I’ve ran to date is 11.9 miles on a coast to coast, so this is a massive challenge for me.
“They’ll all be there at the end if they can be, they’ve been cheering me on throughout.”
Kat got in touch with us in 2023 to enquire about any support we could offer her, her husband Simon, and their children. They were invited on one of our Child and Family Weeks at Harcombe House shortly after.
These weeks bring families with children with additional needs, young carers, children or parents living with difficult health conditions and a number of others together for a much-needed break, and for a fun week packed full of activities.
Kat says: “Fire Fighters Charity was there for me last year when I was struggling mentally with the decline of Tyler and Eryn’s health.
“Luckily, Simon and I are quite strong people, so we’ve just got on with it, but to be completely honest, I think we’re both broken mentally. It’s hard and I think, for the last six years, I’ve just been running on empty. I still am, nothing changes.
“It was a week out from the normal routine for all of us.”
Kat Jones
“With work, I try to put a brave face on it all, but no one can really understand what we’re going through.”
She adds: “We were offered a Child and Family Week in 2024 by the charity and, at the time, we really needed the break. We both work full-time and the kids’ medical appointments were really ramping up at that point, because they deteriorated quite quickly.
“The kids absolutely loved it, it was brilliant for them. It was a week out from the normal routine for all of us.”
Kat now hopes, by sharing her story, she’ll encourage others who may need support to reach out to us.
“Having the charity there, if we ever need support, is amazing. I’d recommend the charity to anyone who’s struggling a bit,” she says.
“If it helps just one person get the support they need then it’s absolutely worth it.”
You can find out more about the support we offer fire service families here:
If you feel you’d benefit from our health and wellbeing support, you can call our Support Line on 0800 389 8820, make an enquiry online or visit the ‘Access Support’ tab in My Fire Fighters Charity.
And remember – if you’re feeling suicidal, you can call our Crisis Line 24 hours a day on 0300 373 0896.