Man’s rare epilepsy went undiagnosed until 15 years old
Susan Perry, 25-year-old Tom Perry’s mum, from Marden, speaks of how volunteering at Jump In trampoline park has helped her autistic son
A mother from Marden says volunteering at a trampoline park has helped her autistic son feel part of society.
Susan Perry’s son, Tom, 25, marshals at Jump In, in Morley Road, Tonbridge, for the Special Educational Needs (SEN) sessions.
Mr Perry, of Park Road, was born with Dravet Syndrome, a rare form of epilepsy that has left him with severe autism and learning and behavioural difficulties.
At four months old he had his first seizure which lasted for 40 minutes and left him unconscious for nine hours.
Before this, his family were unaware of his condition, which was initially diagnosed as epilepsy.
When Tom was 15, Mrs Perry and her husband, Adrian, found out what his proper diagnosis was. Research conducted by French paediatric psychiatrist, Charlotte Dravet, discovered a rogue gene which causes the condition.
His mum, 65, said: “It was a relief to get a diagnosis. Now the consultants know what medication to put him on because they know what works and what doesn’t.”
His seizures are manageable with medication, but he still has them every day in his sleep. Mrs Perry said: “We came very close to losing him, we did lots of emergency dashes.
“Now the boy that you see is very different. He is mobile and he can hold a conversation.” At points when he was hospitalised, his mother said he would rock back and forth, dribbling and unable to do much. Mr Perry, who is a keen trampolinist, approached Jump In and asked for a job.
Joe Upstone, the regional manager, spoke to his mum, who requested that Tom go through the normal interview process. In exchange for his time at the SEN sessions, which run between 4-6pm on Wednesdays and 9-10am on Sundays for £7, the centre pays him in free jumping time.
His mother said: “As far as Tom is concerned that is his job which he has totally embraced. He will tell the other staff what to do and how to do it.
“Tom wants to be the same as everyone else and to be the same as everybody else he needs a job. “If the people weren’t friendly towards him, he wouldn’t want to be there, but Jump In has been so good with him. They don’t treat him any differently to anyone else.”
The 25-year-old has been working there for more than two years.
He has a uniform, a walkie talkie which he talks into frequently, and a badge which says he is the head of the session. His carers join him but sit back while he does his job.
Shane Kugthasan, who has been Tom’s carer for four years, said: “No one treats him any different and we’re grateful to Joe who went above and beyond what is expected. They are always catering to Tom’s needs.”
Mr Upstone said: “The team have responded well and taken it in their stride. It’s been a positive experience for everyone to be able to include him.”
As well as trampolining, Tom enjoys going to SEN discos. Mrs Perry said her son’s illness had a massive effect on their family. Her daughter, Kate, became a paramedic as a result and her son, Christopher, heads up Pulse Guard, a company which specialises in seizure monitors. The family designed their own for Tom and wanted to share it with others affected by the condition.
His parents are members of The Dravet UK Support Group and attend annual conferences in London and Liverpool.