A YOUNG boy suffering from a rare form of epilepsy has become the focus of a national campaign.
Jimi Hyde, four, from Cirencester, was diagnosed with epilepsy in December 2012 and has been highlighted in the country-wide campaign to raise awareness of the condition during National Epilepsy Week.
He had his first seizure when he was three while visiting his family in Holland.
Despite his epilepsy, Jimi started at Powell’s Primary School last September, where he has made lots of friends and enjoys music and drama over any other subjects.
“He enjoys school, but struggles,” said mum Helen. “Powell’s are very accommodating though. He has just gone through the Special Educational Needs (SEN) process as he can’t keep up as well as we would like him to.
“We thought this was because of the medication he is on, but it is because of the epilepsy itself. He finds it hard to concentrate due to lots of small epileptic episodes during the day.
“He has lots of friends though and loves singing, dancing and drama. It’s his way to express himself. He sits at the table at home with a guitar and writes little songs and sings them.”
Jimi’s first seizure was a tonic-clonic seizure where the body becomes stiff, the arms and legs begin twitching and the person often loses consciousness. Although the seizure usually lasts for around two minutes, Jimi’s lasted 45 minutes.
Helen said it was utterly terrifying for everyone who witnessed it.
Initially, she was told that with the right medication, her son’s seizures could be under control within five months, until she found out that he suffers from a rare form of the condition.
“We are still in the process of getting an accurate diagnosis for Jimi which makes life really uncertain.” she said. “In a way, it is this uncertainty that is the hardest thing to live with.”
Although Jimi will only turn five next week he is aware of his condition and knows he is different to his classmates.
Helen explained: “He calls it the ‘wobblies’.
“He was so little though when he was diagnosed, so he does not know any different,” she said About 52,000 people are living with epilepsy in the South West. The charity Epilepsy Action offers sufferers and their families support and advice.
Nicole Crosby-McKenna of Epilepsy Action said: “Being diagnosed with epilepsy can be a real shock. People worry about how it will affect their lives – their education, career, and every day activities such as driving, socialising and having a late night.
“It’s not unusual for someone to tell us that they never suspected they might have epilepsy, because they didn’t know that what was happening was a seizure.
“There are more than 40 different types.
“We are reaching out to people newly diagnosed with epilepsy. We want to let them know that they’re not alone.”
For more information about National Epilepsy Week, including details of how to take part and the support available, visit epilepsy.org.uk/epilepsyweek or call the Epilepsy Helpline freephone 0808 800 5050.