A young boy with a rare and severe form of epilepsy has been told that he will be the guest of honour at a charity fundraising event.

Brandon Lowther, 11, Essex, suffers from Lennox-Gastuat syndrome – and lost the ability to speak as a toddler, following multiple seizures.

But young Brandon and his family received news this week that they had been appointed guests of honour at a Little Havens charity fundraising event – a charity which has supported Brandon since he was five-years-old.

“Without them Brandon wouldn’t have the support he needs,” said Jenny Lowther, Brandon’s mother.

“People see his illness but they don’t see the bigger picture.

“It’s your whole life, everything revolves around it because anything could happen to him at any given time,” she said.

Brandon’s rare condition requires him to wear a protective hat at all times – to prevent potential head injuries following unexpected or unpredictable seizures.

As Brandon gets older, his seizures are highly likely to become more severe, and his needs for specialist care will be increased.

“It’s about appreciating the moments with your family, because you don’t know when it’s going to end,” said Ms Lowther.

Brandon and his family will font a charity fundraising event at Eastgate Shopping Centre in Basildon on Saturday 25 June.