BUDE’S Emma Penfound is pleading with local authorities to do more to help children who live with brain injuries, writes David Sillifant.

Emma’s ten-year-old son Matthew contracted Meningococcal Septicaemia at just five-months-old, and although he survived after spending three weeks in Barnstaple Hospital, Matthew has been left with Sensory Process Disorder (SPD), which is a condition where the brain has trouble receiving and responding to information that comes in through the senses.

Common effects of the disorder include sufferers being oversensitive to things in their environment, while common sounds may be painful or overwhelming.

Emma said: “One day Matthew didn’t wake up at the normal time he does and I noticed a couple of bruises on his chest. His temperature was over 40 degrees (C) and he was shaking like jelly.

“We rushed him to hospital and it wasn’t long before the doctors diagnosed Matthew with Meningococcal Septicaemia, which is an incredibly serious bacterial infection. His organs started to shut down and he was put in intensive care. The doctors couldn’t assure us that he was going to pull through but thankfully he did, although it was touch and go for a while.

“However, what shocked us was that when he came home there was no support, information or financial help available and there isn’t now. The SPD really affected his speech, so much so that he could barely say any words. However, he was put on an occupational reading therapy course, but we had to go all the way down to Plymouth for it. There should be a service much closer to Bude as we’re in the back of beyond. There’s absolutely nothing around here to help children with these sorts of problems.

“I rang the Cornwall Community Trust a while ago and they simply said that we don’t go up as far as Bude, which made us incredibly angry. The support services down here just aren’t good enough and it needs to change.

“I want to promote these types of issues and help raise money for a community centre or for more sensory equipment. A lot of children with a brain injury end up being forgotten about, as people aren’t aware that just because he looks like a typical ten-year-old it doesn’t mean he can’t have a disability.”

Living with a child who suffers from SPD causes certain problems for Emma and her husband Bevil. Matt barely sleeps, which means that both parents do well to get more than three hours sleep a night, despite both of them having full-time jobs.

As well as that, Matthew’s speech is still an ongoing issue, despite improvements. He has no sense of danger, doesn’t feel pain and has no brain impulse control, and only gets sensory stimulation through his mouth.

Emma explains: “Matt doesn’t really sleep and has no body clock. He struggles with independence and has to be constantly reassured and talked to. If he gets an idea in his head then there’s no budging him. It’s an ongoing battle although his speech has improved a lot. When he was in reception he couldn’t read or write but he’s now quite literate and is top of the class in maths.”

Despite all of her gripes with the lack of help, Emma is also full of praise for Matthew’s SENCO (Special Education Needs Co-ordinator) at Bude Junior School, Tanya Banks, and Manchester City Football Club who have helped them no end.

Emma continued: “While organisations such as Meningitis Now and the Child Brain Injury Trust have given some advice and are happy to go in and talk to schools, the biggest helps to Matthew have been Tanya Banks and Manchester City.

“Tanya has supported Matthew no end and has been absolutely amazing with him. She’s got an enormous understanding of what he needs. For example, Matthew struggles to listen when people are talking behind him, so she’ll position him where he can just focus on what’s in front of him.

“Without her he’d have struggled even more than he has so we can’t thank her enough.

“Manchester City have also been amazing. He went on a stadium tour a couple of years ago and when they heard of his story they invited him to become their mascot for their home game with Aston Villa.

“Since then, he’s taken part in a number of training sessions, met lots of the players, scored against Joe Hart in front of 54.000 people and has been sent signed shirts by the team and his favourite player, Sergio Agüero. He goes up there four or five times a year and it’s great what they do for him.

“However, we need local authorities and people down here to come together and support children with brain injuries so that they can live a much better quality of life. We need a facility and to be able to afford sensory equipment, so I urge people to come together and make a difference.”

To donate to Emma’s Just Giving page, visit www.justgiving.com/crowdfunding/Emma-penfound/