Epilepsy Lifestyle gives peace of mind to sufferers

Marie Baker, of Wilton Avenue, Eastbourne, set up Epilepsy Lifestyle 18 months ago. The charity raises money for epilepsy monitors.

Marie’s nine-year-old daughter Aimee, who attends South Downs Community Special School, lives with a life-limiting form of epilepsy.

“Aimee is the reason I set it up,” said Marie.

“She has very severe seizures and pretty much all of them are in her sleep.

“We don’t hear her going into a seizure. They have lasted up to and hour or over an hour. It was tough to start with, for our family it was either sink or swim.”

Amiee, who has a learning disability, had her first seizure when she was four months old. At nine months, she was diagnosed with Dravet Syndrome, a rare form of childhood epilepsy.

The family has been fortunate to receive a monitor – worth around £800 – from Eastbourne DGH to monitor her sleep, but Marie said many people’s lives could be improved with the Night Time Monitoring Programme.

“If Aimee is going into a seizure then the monitor will alarm,” said Marie.

Sudden Unexpected Death in Epilepsy Patients affects one in every 1,000 epilepsy sufferers.

“She may overnight have ten seizures, but it is something we can deal with,” added Marie. “We have all the equipment at home. We are very lucky.

“It brings you peace of mind. I know that I wouldn’t be able to relax at night. When she is in bed she is really well monitored. With regards to her epilepsy, that is when I feel safest.”

However, Marie said many families are unable to access support.

“In families who have children with epilepsy often one parent has to give up work. Lots of charities won’t fund medical equipment because they believe the NHS should supply it but the NHS can’t afford it. We try to fill that gap.”

The charity is run by four people including Marie’s partner Ian Kirwan.

“There are four of us involved and we all have a connection to epilepsy. Our big thing is getting fundraising out there to people who need us. We want people to know we are there.

“We have a lad out in St Leonards who has had a monitor from us.

“He said it makes him feel safer. A little girl recently from Eastbourne just started having seizures. Her mum and dad say their monitor is really useful and don’t have to go into her room to check on her.”

Marie said the charity are desperate for people to know they can help.

“No one should ever have to wake to find their child or loved one has died in the night from a seizure,” she said.

“Epilepsy can, and does, kill, our mission is to do everything we can to prevent that happening and provide reassurance during the night. “

Marie said her daughter doesn’t really understand her condition and seizures.

“She lives in her own little bubble. She is a really, really, happy little girl.”

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