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Tuesday, 21 October 2014

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South Cumbria mum fears her son may not survive his seizures

A MUM whose epileptic tot had more than 100 seizures in a year is terrified one day he will not survive.

The youngster had his first seizure at five months old and is at the “worst stage” of Dravet syndrome, a rare form of epilepsy.

The syndrome affects one in 40,000 babies, of which about 15 per cent will die.

Mum Steph Smith, 30, of Broughton, said: “It’s been so hard. “We (she and husband Wayne, 32) are absolutely petrified we will lose him.

“We have been told by doctors that he’s currently in the worst stage of the condition and we are just trying to keep him with us.”

Friends and family are due to take part in a number of charity events to raise money for Dravet Syndrome UK, as well as Furness General Hospital where two-and-a-half-year-old Jake has received care.

Mrs Smith is part of a team of 22 to take part in the 23-mile Coniston to Barrow walk on May 10 to raise money for the children’s ward at FGH.

Mrs Smith, who has had to give up work due to Jake’s condition, added: “We want to thank all the fantastic and dedicated staff who always look after Jake so well at Barrow-in-Furness children’s ward.”

Jake, whose longest seizure recorded was four hours, was diagnosed at 18 months old.

Despite the condition, which affects child development, being due to a faulty gene, twin sister Ella has not been affected and is “absolutely fine” said their mum.

She added: “It’s terrible for Ella when he has a seizure because she doesn’t know what’s happening.

“And we never know if he’s going to come back from it.”

A second fundraiser has been organised at the Black Cock Inn, Broughton, on July 12, with live music.

Jake, who is attends Quarry Brow Nursery in Barrow, is able to walk, talk and feed himself, but his mum is fearful of the future.

She said: “You get cases where the child will be fine then they get up to two-years-old and suddenly can’t walk or talk any more. A lot of children who have the condition have died during seizures because their hearts just stop.

“There’s very little known about the condition.”

Jake has been treated in Furness General, Newcastle and Great Ormond Street hospitals.

Mrs Smith added: “At first we thought it might be the more common version of epilepsy because doctors said it can present itself like that.

“We have to take oxygen wherever we go in case he has a seizure and we have to have two adults with him at all times.

“We have been extremely lucky with staff at FGH who trained the staff in the condition so that they are able to help him when there’s a problem.”

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