CARING 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.
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.
The six-year-old has severe global developmental delay and was given a life expectancy of just two years when he was diagnosed at six months old.
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.
The youngster attends the Vale of Evesham School where he gets a huge amount of support, including physiotherapy, occupational therapy, speech and language therapy, swimming, messy play, music and communication groups.
Mum 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.
“He cannot talk but has learnt to communicate with us very well. He suffers with epilepsy and has seizures on a daily basis,” she added.
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.
While the family are incredibly grateful for the support, the amount of room the lift will take up together with adaptions to the bathroom mean they hope to build a double-storey extension.
“This will make his bedroom larger to accommodate everything he needs, the bathroom to become a far better size wet room and make our kitchen and dining area all fully accessible to Barney in his wheelchair to manoeuvre around,” Beverley said.
“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.
“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,” Beverley said.
“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,” she added.
Students from Evesham and Pershore 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.
Anyone who might be able to support the ‘Build for Barney’ campaign can contact Beverley on 07799 672658 or e-mail email@example.com