Colchester dad running ultramarathon for his children with a rare syndrome
He's raising money to build a sensory room in his garden
A Colchester dad of three is running an ultramarathon today in a bid to raise money for two of his children who have a rare genetic condition.
38-year-old Thomas Munson will attempt to cover 50 kilometres, for his children Oscar, 6, and Mary, 8, who have Rett Syndrome, a rare disorder which affects brain development and causes a progressive loss of motor skills and language.
It's present in just one in 40,000 boys and one in 10,000 girls in the UK.
Thomas, his partner Madalaine, 34, and their son George, 10, are fundraising to build a sensory room in their garden for Oscar and Mary, which they estimate will cost around £15,000 to build.
Thomas told us how the room would be helpful: "Essentially Rett Syndrome is a regressive condition, meaning, if the child stops using an ability that they have developed, they can lose it and then, unfortunately, it's very hard for them to get it back.
"Therefore, what's particularly important for children with Rett syndrome is a good sensory diet.
"This sensory room would help us fulfil their sensory diet and help them keep some of the skills that they've got active, so they don't lose things like touch, feel, smell, taste, the ability to play, to hold and to grip."
Thomas says the ultramarathon is about fundraising and raising awareness: "I always want to push myself in everyday life - I don't like sitting still, I don't like being lazy and I'm always looking for different challenges.
"Since we've had Mary and Oscar's conditions diagnosed, I just want to do what I can. I'm not a doctor, so I can't heal them, as much as I'd like to, but what I can do is try and raise awareness...
"I want to make sure other parents know about Rett Syndrome because we didn't know what it was... if we'd have known about it, we might have raised it with our doctors when we were trying to get Oscar diagnosed.
"I hope that if I put myself through these challenges and talk about the syndrome enough, people will start hearing about the syndrome, start looking into it and become aware of it."
The family has already around £5000 through events including Thomas walking up Snowdon carrying 45kg – the weight of Oscar and Mary combined at the time - as well as fundraisers in local pubs and donations from family, friends and supporters.
Thomas added: ‘We are very grateful for how family, friends and the community have got behind us. We want Mary and Oscar to have the best quality of life they can, and for George to have the most normal childhood possible. Every penny counts and it means a lot to have so many people backing us.’