8:00am Monday 22nd March 2010
By Emma Palmer
KNOWING your child is never going to talk is something most parents could never comprehend. But for the family of little Brandon Lowther, this is a sad reality.
The five-year-old tot suffers from a severe form of epilepsy known as Lennox Gastaut-syndrome, a condition which is not only very rare, but impossible to cure.
Brandon, who goes to Glenwood special needs school in Thundersley, cannot speak as a result of the condition and suffers severe learning difficulties.
Although he can walk a little, he spends a lot of time in a wheelchair and has mobility problems.
He regularly has “drops”, where he will just suddenly fall down on to the floor – often resulting in him injuring himself.
He also has blackout seizures where he will just pass out on the floor.
Mum Jenny, of Long Gages, Basildon, said: “It’s hard, but we try to stay positive. Brandon is a wonderful boy and we love him very much.
“He has to wear a type of helmet to protect his head every hour of the day, except when he is in bed, as he falls down so much.
“He is now on a waiting list to have brain surgery at Great Ormond Street Hospital in London. Although this won’t cure his illness – nothing will, sadly – it should reduce the number of drops he has, which would greatly improve things.
“Sometimes when I hear friends and people talk about their children and what they can do, it can be tough, but then as a mother you just have to get on with it.
“You want to do everything you can to help your child and that’s why we have decided to do something for Brandon.”
Although they know they can do only a limited amount to help him, Brandon’s family have been galvanised into action to organise a fun day in his name.
Jenny, 24, her husband Stephen, 29, and their friends and family are staging a day of events to raise enough cash to buy Brandon a much needed stairlift.
But they also want to raise awareness of epilepsy, which can strike at the heart of a family at any time.
Jenny explained: “One of the hardest things has been that Brandon wasn’t born with epilepsy.
“He was absolutely fine. He had a normal birth and was developing well, until he reached about ten months old.
“He then started having spasms and seizure and he just stopped progressing.
“We knew something was very wrong and eventually he was diagnosed with the condition.
“In a way it was harder, because he had been fine and we thought everything was OK. It just came on so suddenly and then everything changed.”
The family are organising a Brandon funday on Sunday, April 5.
“We are hoping as many people as possible will come along and support us so we can raise enough money to buy Brandon a special stairlift,” said Jenny, who had to give up work to become a full-time carer for Brandon.
“At the moment it is really hard for him to get up the stairs because of his mobility and this will help him a lot.
“We have to pay for this ourselves and don’t get any help from the NHS – that’s why we organised the fun day.
“The stairlift costs around £5,000, but we also want to give some of the proceeds to the charity Epilepsy Action.
The event will be held at Horndon-on-the-Hill Cricket Club, in Orsett Road, Horndon, from 12.45pm onwards.
It will feature appearances from In the Night Garden characters Upsy Daisy and Iggle Piggle, a children’s entertainer, a barbecue, easter egg hunt, a football match, bouncy castle, face painting, stalls, auction and live entertainment.
Entry is £3 for adults and £2 for childen.
Jenny added: “We would appreciate any donations or anyone who wants to help out to get in touch.
“We particularly need some help with getting people to and from the fun day and have been looking for a taxi firm that may be willing to help us out.”
Contact Jenny on 07535 661774.
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