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A Nottinghamshire nine-year-old with a connective tissue disorder which makes it hard for him to walk is making a 100km ‘spacewalk’ over the summer to raise money for a disabled children’s charity, so other disabled children just like him can be helped.

Timothy Dickson has Ehlers-Danlos Syndrome, also known as EDS, which affects his joints and causes him chronic pain and fatigue. He also has Autism and five years ago received a specialist bed from Newlife the Charity for Disabled Children to keep him safe through the night, as he only slept for a few hours and would often try to eat non edible objects, like carpet.

Now, as the current title holder of Little Mister Sparkle, a pageant which allows anyone to compete regardless of their differences, Timothy is hoping to raise at least £500 for the charity which helped him by walking the equivalent distance of the border between the Earth’s atmosphere and outer space – and took his first steps on Saturday June 12, completing 13 km – which received tweets of support from astronaut Tim Peake and Professor Brian Cox.

Timothy was unable to walk properly until he was aged two and as he still struggles physically, he will be walking around his local village of Tuxford in a 2.5km loops, which will take 40 laps to complete the full 100km (66 miles) by September 1.

Timothy said: “I can’t believe my heroes are proud of me! I wanted to do this because Newlife helped me get a specialist sleeping pod which I use to keep me safe at night. This year I wanted to try and raise some money so that they can help another child like me. I ran a photo competition and raised £120 and now my challenge is to walk to space.

“My bed keeps me safe and is my special place. I know there are lots of children like me who need specialist equipment that the NHS can’t fund or are only able to supply a very basic model, when a more specific model is needed.”

Newlife is the leading charity supplier of specialist equipment for disabled and terminally ill children around the UK, providing grants of equipment including specialist beds, seats, buggies, wheelchairs, walking frames and car seats to keep children safe and improve their quality of life.

The charity also runs the only emergency equipment service that aims to get loans of specialist disability equipment to families in crisis anywhere in the UK within 72 hours.

Mum, Laura, who also has Ehlers-Danlos Syndrome and needs to use a wheelchair, said: “Timothy is crazy about space and initially wanted to walk to the moon for Newlife, not realising just how far it is. He loves reading and learning about space and he hopes to be able to wear his favourite NASA suit for some of his walk. He was literally bouncing when he received the tweets of support.

“Due to both his Autism and Ehlers Danlos he does struggle to walk far, so it will be quite a challenge for him. On the first laps on Saturday we did have to stop a few times and had to sit down at one point, but it will be a wonderful achievement for him to complete on behalf of Newlife. We hope we can get people to support him.”

To support Timothy’s fundraising for Newlife please visit: