A boy’s bedroom fit for the future has been created thanks to the kindness of a community which has helped fund a £14,000 extension to his family’s home.
Benjamin Edmundson-Brown is one of around eight people across the world with a condition so rare, it is yet to be given a name.
He was just 3lb 3oz when he was born 10 weeks premature with a genetic disorder, which has left him unable to walk, talk or swallow, although he is able to get about by crawling.
He also has epilepsy, is partially blind, has major scoliosis of his spine, which will require surgery in time, and is unable to digest his food, which means he is tube-fed.
His parents Victoria Edmundson-Brown and stepfather Peter Kelly put up padding around his bedroom and created a low bed to keep him from injury, but knew changes had to be made to their Easington Colliery home to keep him safe and happy as he grows.
Read more: Fund launched for youngster with rare unnamed disorder suffered by only 8 people worldwide
Now the 12-year-old, who attends the nearby Hopewood Academy, has a room on the ground floor, with a window through to the sitting room so his parents can keep an eye on him after the building work was completed by Houghton firm Build On.
It will honestly change our lives.Peter Kelly
Peter, 51, a singer, and Victoria, 47, who works as a mental health nurses, say they are delighted with the support they have been given by friends, family and strangers.
They have also been helped by the Bradley Lowery Foundation, set up in the name of the six-year-old Blackhall Colliery boy who lost his battle against neuroblastoma in 2017, and the Smile for Life charity, as well as Murton men Jimmy Collings and Bill Jones, who collected cash through entertainment events.
Related: Building work due to begin to make a new bedroom for Benjamin
Work is ongoing on a £3,000 sensory garden, which is being laid by Dolans, but the fundraising goes on as the couple look to fund a £6,000 bed for him.
Peter said: “His bedroom is finished, but the kit we need is a bed, as the one he has at the moment is not meeting his needs and the local authority has said it won’t pay that much for a bed.
“We’re ecstatic with how the extension looks and he’s 12 now and this will be the first time in his life he has been able to crawl to his own bed and Victoria and I bawled our eyes out, just to be able to see him have his independence.
“We can look through from the lounge to see him and when he wakes in the morning, he can sit and watch TV through the window and he absolutely loves it.
“It will honestly change our lives.
“When the work was going on it was like our own version of DIY SOS, with lots of people coming and helping, it’s been so humbling and we can’t thank people enough.”
Gordon Littlewood, who runs The Mallard pub in Seaham, and a group of friends are preparing to do a six-day motorbike ride to help the campaign.
Donations to the fund can be gifted via https://bit.ly/2oG4UFb.