Boy, 6, “cured” of epilepsy after going from 45 seizures a day to none thanks to pioneering surgery
Headgear: Tom had to wear a special helmet to protect him from injury during his seizures
Little Tom Morley had to wear a padded helmet constantly because he suffered 45 epileptic fits a day.
But now the six-year-old from Ilkeston, Debyshire, has now been seizure-free for the last three months, thanks to a pioneering operation for children at a leading hospital.
The schoolboy’s parents Andy and Holly had the helmet made specially after Tom split his chin open on stone steps during one collapse.
His father, 30, said: “He had to go to hospital to have it put together again. He has a massive scar there now.
“He also suffered other injuries, including countless bruises and black eyes.
“It was so difficult to deal with because we couldn’t leave him on his own at all.
“He’d just drop like a puppet whose strings have been cut.
“In the end, we had a special padded helmet with a chin support made to protect his head.”
Tom was just eight months old when his parents first noticed his condition.
“He was lying in bed with me and his mum, Holly, when he made a terrible croaking noise,” said Mr Morley, who has since split-up from his wife.
“His whole body went rigid, then he curled up into a little ball. His eyes rolled back and his mouth was wide open.
“He then started to turn blue, as he couldn’t breathe. It was terrifying.”
Healthy boy: Tom, right with his father Andy Morley, left has been free of seizures for four months since his operation
At hospital doctors thought it was just a bug that had caused a febrile seizure, which can be common in babies.
But they warned Tom would have to have further tests if it happened again.
Mr Morley”s grandfather suffered from epilepsy, as his wife”s cousins, so when Tom had another fit two months later, his parents were prepared for the diagnosis.
Tom’s seizures started coming every three to four months, each one the same as the first.
Then as soon as he started nursery, he began to have five or six a week.
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Tom as a baby, he was just eight months old when his parents noticed his condition
“The VNS had little effect to start with, which left us disheartened because we had read such good things about it, but after 18 months we have now started to see a real improvement – and Tom has been seizure-free for the last three months,” said Mr Morley.
“To go from 45 a day to zero is absolutely fantastic. Tomcalls his VNS his magic battery. He still wears his helmet just to be safe, but we’ve finally been able to take the stairgates down from the stairs.”
As well as overcoming his health problems, Tom has had to face up to bullies and work even harder at school. “People have asked how have we coped but you just have to deal with it, you have no choice.
“I’ve always talked to Tom about his epilepsy but he’s still at an age where he doesn’t fully understand.
“It used to bother him but in the last few months he has been able to do much more.
“There was a time where he would come home and say people were picking on him.
“It wouldn’t just be the children, sometimes we’d hear parents sniggering on the playground too.
“Few people seem to care about or really understand epilepsy and I suppose I was probably the same six years ago.
“When Tom first started school, having up to 45 seizures a day did interrupt his learning and his short-term memory.
“One day he’d learn how to count to five – but he wouldn’t be able to do it the next. But he has caught up so well with his reading and writing now that he’s only slightly behind the others.
“He’s a little soldier and my inspiration”.