Fund launched for youngster with rare unnamed disorder suffered by only 8 people worldwide
A family has started a fund to kit out a bedroom fit for their son who has a condition so rare it's yet to be given a name by experts.
Benjamin Edmundson-Brown’s condition is so rare there are only seven or eight people in the world have the same thing.
The youngster’s existing room has been padded out with mats on the walls and a mattress on the floor so that the 11-year-old is not hurt from a fall from his bed.
Now his parents are making plans to ensure he is given a space to keep him safe as he grows.
Benjamin was just 3lb 3oz when he was born 10-weeks premature, with the genetic disorder he has leaving him unable to walk, talk or swallow, although he can crawl.
A tube is used to help him feed because Benjamin can’t digest his food, while epilepsy causes seizures.
Mum Victoria Edmundson-Brown and stepfather Peter Kelly, who live in their own home in Easington Colliery, would like to find a new home with a ground floor room which could be adapted, as their existing house would be difficult to change without leaving them no living space.
The search is likely to see them move to Sunderland, with a fund of around £10,000 needed to cover the cost of work, with efforts under way to look at what is available through support services.
Victoria, 46, who works as a mental health nurse, and Peter, 50, who is a singer, have launched an appeal to kick off the cash appeal for Benjamin, who is also partially sighted and has global development delay.
Peter said: “We only got a diagnosis last year, but it’s vague and it’s a very rare genetic disorder, it’s so rare it doesn’t have a name and only seven or eight people in the world have the same thing.
“His room at the minute has mats on the floor and walls.
“It’s quite a small room and we can’t put up curtains in cause he pulls them down, but also we have to carry him upstairs and he’s 11 and he’s growing.
Sign up to our daily newsletter
The i newsletter cut through the noise
“What we need is a downstairs room for Benjamin with a wet room and a proper bedroom for him.
“It will make a vast difference.
“It’s a massive struggle, but I think he knows it causes distress to me and his mum, because he is intuitive.”
Victoria said discussions with experts led to the suggestion a lift could be installed in their home, but that would leave them without any living space.
She added: “It would make such a huge difference. We just want to make somewhere safe for him.
“Ideally, we’d like a bungalow, but we just can’t afford one.
“Peter works part-time, which is great for giving him care, but it takes two full-time wages for what we need, so the option we’re looking at is a house with two living room spaces we can adapt.”
Peter added: “Benjamin is the happiest little boy you will ever meet, he’s our hero.
“He copes with everything so well and he’s got a lovely character.
“He’s the biggest Peppa Pig fan and he loves Super Simple Songs, which he listens to on YouTube.”
A fundraising page has been set up for Benjamin, who attends Hope Wood Academy in his home village.
It can be found via www.gofundme.com/all-around-for-a-bedroom-for-Ben.