THE parents of a severely disabled boy who has captured the hearts of a village community are appealing for help to enable them to extend their home to accommodate his growing needs.

Six-year-old Barney Gardner, who lives in Ashton-under-Hill with his parents Beverley and Andy, suffers from a rare condition called Lissencephaly, which literally means 'smooth brain'.

Barney also has severe global developmental delay and, after being diagnosed when he was six months old, he was given a life expectancy of just two years.

Beverley said: "He is currently outperforming their expectations of him, but with this being a ‘life limiting’ condition, we don’t know how long we will be lucky enough to have him for. Every day is a blessing."

Barney needs everything doing for him - he can't walk, and can only stand and hold his own weight with support for a very short space of time. He cannot feed himself, or toilet himself.

"He needs us 24 hours a day for everything," added Beverley. "He cannot talk but has learnt to communicate with us very well. He suffers with epilepsy and has seizures on a daily basis."

Barney attends the Vale of Evesham School in Evesham where he gets a huge amount of support, including physiotherapy, occupational therapy, speech and language therapy, swimming, messy play, music and communication groups.

Wychavon District Council have offered a grant for Barney to cover the cost of a lift from downstairs up into his bedroom, and help towards his wet room, and some internal movement of walls to make his room slightly larger.

"We are incredibly grateful for this support, but with the amount of room that the lift will take up, and trying to adapt an already small bathroom into a wet room, which is going to be a very tight space, we felt that the overall best idea for us as a family would be to extend outwards and build a double-storey extension," said Beverley.

"This will make his bedroom larger to accommodate everything he needs, the bathroom to become a far better size wet room, and can make our kitchen and dining area all fully accessible to Barney in his wheelchair to manoeuvre around, so not compromising our daily living and not to restrict Barney at all in his home."

"We realise that this is the more expensive choice and internal adaptions would cost far less. However, it will not suit Barney's or our needs."

Having just received planning permission for the extension, with the backing of local friends, the family have launched the 'Build for Barney' campaign in the hope of getting a support network along the lines of the TV programme 'DIY SOS', which they unsuccessfully applied to.

"We put a poster on the village notice board with the proposed idea, and our friend Sally Guibert created a Facebook page called “Build For Barney”, in the hope of getting support of skilled tradesman, builders and electricians.

"We have already had support in the way of carpentry, a mini digger to help with the foundation work, electrics support and plumbing support," said Beverley. "We are really in need of a bricklayer and plasterer. We've also had offers of support for designing Barney's bedroom, photography and general labouring.

A group of 14 teenage girls from the Evesham and Pershore areas who belong to the National Citizen Service (NCS) have also adopted Barney's cause and organised a cake sale at Prince Henry's High School and sponsored walk to raise funds and awareness of Barney. They met up with Barney at his home on Wednesday, July 20.

Beverley added: "Andy and I are overwhelmed by all the support. Barney is such a little star and we are so proud of him and everything he has to cope with.

"He seems to have a unique way of lighting up people's lives. Everyone who meets him instantly adores him."

Anyone who might be able to support the 'Build for Barney' campaign can contact Beverley on 07799 672658 or email beverley.29@hotmail.com