A FUNDRAISING campaign to help improve the quality of life of an 11-year-old boy with a rare genetic disorder has been launched by his family.

Benjamin Edmundson-Brown, one of only eight people in the world with the unnamed condition, cannot walk or talk, suffers from scoliosis of the spine, epilepsy and is visually impaired.

He cannot eat and is fed through a tube.

His family have to carry him upstairs every day to bed in their home at Easington Colliery, near Peterlee, which is becoming increasingly hard and dangerous due to his weight and disabilities.

They have also had to line the walls and floor with mattresses in case the youngster falls from his bed.

Benjamin’s stepfather, Peter Kelly, 50, who lives with his mother Victoria, 46, a mental health nurse, has said they desperately need to extend their Wordsworth Road home.

The plan is to build a ground floor bedroom that can be adapted for his needs.

He said: “I have to carry him upstairs to his room every night and bring him down every morning.

“He is getting quite a big boy now so he is a dead weight. It is not practical and it is not safe.”

Mr Kelly, who is a club singer, has arranged several charity nights as part of the fundraising campaign to raise up to £15,000 for Benjamin’s new bedroom.

The first is on Friday, September 14, at The Mallard in Seaham, the second is the following night at Dalton Park Inn at Murton.

Both nights feature six singers, and are free but raffle tickets will be available on the door.

There will also be a live band and five acts performing at Leam Lane Club in Gateshead on September 27, with tickets costing £2.

The brave youngster, who was born ten weeks premature weighing only 3lbs, has defied all odds to survive the condition and is currently a pupil at Hope Wood Academy in Easington Colliery.

Mr Kelly said: “He was a normal baby until about 18 months, until he started to develop then we realised he wasn’t developing as he should be.

“He has gone under rigorous tests.

“It turns out he has got a rare genetic disorder affecting one of his chromosomes, which has left him how he is.

“It is a so rare it has not even got an name.

“If anyone is able to help us, it would be gratefully received.”

The family is being supported by Smile For Life, a charity which has pledged to organise a team of volunteers to create a beautiful, safe, sensory bedroom for Benjamin once the extension is built.

Chief executive Paula Gascoigne said: “The family is devoted to making Benjamin’s life the best it can be.

“He is such a gorgeous little boy.

“To give him a bedroom downstairs would mean that he is going to be safe and the family’s anxieties can be relieved knowing he is nearby and on the same level as they are and there is less chance of him being injured.

“It is going to make so much difference.”