Teddy's battle with Dravet's Syndrome

TINY Teddy Thompson is “a gorgeous little star” who lights up the lives of his loving family.

Yet day and night the five-year-old battles a rare form of epilepsy which affects everything he does.

Teddy has suffered constant fits since he was born, some so severe and long he has to be rushed to hospital.

If a seizure lasts more than five minutes - and it happens every six to eight weeks - his parents have to dial 999 for immediate help.

Teddy has Dravet’s Syndrome, a random genetic condition which is drug resistant and can give him up to 30 seizures a day.

Mum Amy, 32, and 35-year-old dad Richard both work from home in Ingleby Barwick and fit their lives around him.

Accountancy lecturer Amy who writes text books, sleeps beside Teddy and wakes instinctively whenever he needs her.

“I have a built-in alarm,” she said. “It is scary and horrendous, but we’ve learned to cope.

“It didn’t help that there are no other parents around like us to talk to. We think there are only about 50 families in the UK with children like Teddy.”

At first Amy and Richard thought their only child had a brain tumour, but eventually doctors told them Dravet’s was “the best fit” though he only 80% fits the profile.

The family cannot go on holiday as Teddy needs a special enclosed bed so he sleeps safe, but Amy now trusts him to overnight respite care at Zoe’s Place baby hospice.

But she is reluctant to leave Teddy with anyone, trusting only her mother’s instinct for reading the signs of a seizure.

“The trouble is every one he has means Teddy loses a part of himself to epilepsy,” said Amy.

Teddy’s proud nan Anne Honeywell insists that the little boy’s good progress and the way he enjoys life is “down to Amy and Richard’s care.

The James Cook University Hospital theatre nurse added: “I am very proud of them. We don’t want people to think this is a hard luck story.

“We all love Teddy so much and miss him when he’s not around.”

She is keen to help Amy and Richard, who works for BT, raise awareness of Dravet’s by setting up an on-line forum to support families like their own.

But they need £5,000 to register as a charity - and that’s where family and friends come in. “We are determined to do it for Teddy,” said Anne.

A recent coffee morning at Anne’s house in Great Broughton raised an astonishing £500 to take the fund almost to its target.

One hope on the horizon is that Teddy will have an operation in the New Year to fit a vagus nerve stimulator.

“Some people respond, others don’t,” said Amy. “We just hope it will help Teddy.”