The mother of an 11-year-old boy has spoken out in support of a campaign after his life was changed by a devastating brain condition.
Josh Wells, of Horsham, was nine when he was affected by viral encephalitis in August 2013.
Josh and his parents, Samantha and Steve, want to raise awareness about the condition, an inflammation of the brain, ahead of World Encephalitis Day on February 22.
Without the proper treatment, the condition can be fatal. However, many are left dealing with challenges posed by acquired brain injury.
Josh’s started to complain about headaches, double vision, confusion, a high temperature, tiredness and a lack of appetite. His GP sent him to hospital for tests and it was only after a lumbar puncture that he was diagnosed with viral encephalitis.
Samantha said: “After a week, Josh wasn’t making any progress. More symptoms developed – intense leg pains; he was unable to open his mouth to speak or eat; the left side of his body seized up and he was unable to walk and had high blood pressure.”
Doctors transferred him to London where Josh could receive the specialised treatment.
“Josh was extremely poorly when we arrived and in a lot of pain and confused,” said Samantha. “This was the worst day and night for us.”
“This was the worst day and night for us. I remember rubbing his legs all night and singing nursery rhymes that I used to sing to him when he was a baby to try to calm and settle him.”
“One morning he woke me up to say, ‘Mummy, I can move my fingers a bit.’ This was such a happy moment.
“During our third week in hospital, Josh really began to improve – sitting up, getting out of bed, wanting to eat real food again, and being able to move the left side of his body.
“It was amazing to see him getting better every day. Thankfully, Josh can’t remember too much of his illness and hospital stay.”
Josh has recovered well but has struggled with tiredness and headaches.
Samantha said: “He still struggles with concentration and attention but with help from The Encephalitis Society, a local brain injury unit and his school, we are in a good place again.”
The Encephalitis Society is asking people to wear red to raise awareness and funds for World Encephalitis Day as part of the #RED4WED campaign.
Dr Ava Easton, chief executive of the society said there is still a ‘long way to go’ to make the public and some health professionals aware of the condition.
“We still have a long way to go to make the public and some health professionals aware of a condition which affects more people than Motor Neurone Disease and bacterial Meningitis and yet remains less well known.
“But by having survivors and their families come forward to show the human side of this ‘hidden disability’ can only be a good thing for informing the public about this condition.
“The sad fact is that not many people have heard of encephalitis unless it has happened to them, a family member or friend. We want to change that.”
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