THE FAMILY of a boy with severe epilepsy will be the guests of honour at a special fundraising event.

Brandon Lowther, 11, from Basildon, has Lennox-Gastuat syndrome, a rare type of epilepsy which means he has multiple seizures.

His family have been supported by Little Havens Hospice, in Thundersley, since he was five-years-old.

Although Brandon started to say a few words as a toddler- including mummy, daddy, car and plane- the seizures meant he lost the ability to speak.

He also needs a wheelchair and has to wear a protective hat.

His mum Jenny Lowther, 31, and dad Steve, 35, said family breaks to the hospice

Mrs Lowther said: “Having a child who is ill - it’s the unknown, you have no idea what it’s like until you’re in it. Everything is harder, everything is a battle. Not only am I a mum, I’m a nurse. It just puts a different perspective on life.

"Little Havens is an opportunity for us to be a family. It is our time. Without them Brandon wouldn’t have the support he needs, we wouldn’t have the break we need."

She added: "Looking after Brandon has a massive impact, I don’t think people realise the restrictions it can place on the family.

"People may see his illness but they don’t see the bigger picture, what it’s like living with him.

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

"Brandon’s condition can change so quickly it can even catch us out, it’s a big ask of anyone.

"We do need help, we do need people around us. Going to Little Havens is like a holiday, a short break we can all enjoy and which is suitable for Brandon’s needs. They are there to be supportive of us.

"It’s a place we can go and just relax, and thoroughly enjoy time with the children without the worry of all the day to day chores we just don’t have time to do.

"They might be simple things but they can really grate on you and have a knock on effect on the whole family."

As Brandon gets older, his seizures will become harder to control and could prove fatal.

Mrs Lowther said: “Little Havens does make every day count and we do. It’s about having time, it’s about not having to worry, it’s about knowing if Brandon was coming to the end of his life, we’ve got somewhere. It’s about being a family one last time. I didn’t think we realised how much more that would become important to us.

"It’s about appreciating the moments with your family because you don’t know when it’s going to end."

The couple, who are also parents to Katie, eight, and Rosie, two, will be the guests of honour at the Eastgate Shopping Centre's One Great Day fundraising event in Basildon on Saturday.

Marketing manager Mike Horton said: "We learned from Little Havens that there was a family from Basildon with a youngster who used both the Hospice and Great Ormond Street Hospital in addition to shopping here.

"We therefore had no hesitation in inviting the family to meet us all at Eastgate for a really special welcome and a Saturday they enjoy to the full.”