We are thrilled that Josh has been nominated for the Child of Courage Award as part of the Carmarthen Journal’s annual Community Hero Awards. The winner will be announced at a ceremony on 26th September 2014.
Josh was born with a condition called Agenesis of the Corpus Callosum, a rare condition. It means that Josh is missing all the connective tissue that links the right and left hemispheres of his brain, which has resulted in Josh having severe learning disabilities. He has poor concentration and can be easily distracted, has problems with balance that can often make him sick and, as he’s gotten older, has developed more severe autistic tendencies.
It took a long time before it was recognised that Josh had a problem, but when Josh was finally diagnosed his parents didn’t know where to turn – “Eventually the doctor said ‘your child will be severely disabled. We came out of the hospital in one hell of a state. But we learned very quickly that we had to cope somehow.”
Josh’s family got in touch with Cerebra and we’ve been there for the Nurse family throughout Josh’s life with advice, support and information. Our grants scheme helped to pay for special sensory toys for Josh to aid and improve his development as well as a touch screen computer; the family have also stayed at our holiday home, Vallecchia, in Pembrokeshire.
Josh has also been a great help to the charity when we’ve needed him – he has drawn the winning tickets in our summer and winter raffles, presented cheques to our lottery winners and posed for photos for charity publicity. Some of you may recognise Josh who helped us celebrate our 10th birthday a few years ago. He is such a pleasure to be with and he has touched the hearts of everyone who has met him.
Josh’s mum Julie and dad Darriel, as well as the rest of the family, have worked hard to give Josh a full and rewarding life and Josh is a credit to them. Josh needs to be kept active and to have a routine that he is familiar with and has a team of people who help do just that – through school, support groups and respite care.
Although he’s limited with what exercise he can do, he enjoys being in the water and is a keen member of the Salmon Club. Josh loves music – especially dance music – and sings and dances to Calvin Harris in his room. He also gets the chance to dance at a Zumba class through school.
Josh has a great fascination with technology and likes nothing better than spending time looking at equipment in Curry’s/PC World. The staff in the Carmarthen branch have got to know Josh and earlier this year took the casing off a washing machine and covered the workings with Perspex so that Josh could spend a happy few hours working out where all the wires and pipes went!
Life has been even more tough for Josh in recent times as his mum and dad have both battled with ill health. Darriel has endured 5 spinal operation, which have all failed, leaving him in continuous pain and his mum Julie has been receiving treatment for a brain tumour. On top of this Josh is making the difficult transition to teenage years and secondary school, where he has settled in well.
All of these circumstances and uncertainties would be difficult for any child but for Josh, who relies on routine and stability, it has been extra hard. He is a sensitive, loving boy who is coping really well and is determined to enjoy his life despite his difficulties.
The whole family are a pleasure to know and everyone at Cerebra is is so proud of Josh who shows such great courage in overcoming the problems that he faces. We are keeping our fingers crossed for Josh at the ceremony on Friday – we’ll let you know how he gets on.