‘Epilepsy awareness could have saved son’

7:00am Monday 26th July 2010

By Liam Sloan

A MUM whose teenage son died suddenly from an epileptic fit is helping launch a new campaign to reduce deaths from the condition.

Army Cadet Darren Barrett was 16 when he suffered a huge fit in the middle of the night and never woke up.

His mum Amanda James, 45, of Merritt Road, Didcot, who found him the next morning, had never been told one of Darren’s night-time fits could kill him.

She said: “He was absolutely fine growing up and then, at 14, he just got epilepsy out of the blue. There was no explanation.

“I remember an appointment in theJohn Radcliffe Hospital, and asking if there were any dangers in his sleep, but being told no, so we did not worry too much about it.

“He quite often had one fit a night, other times quite a few. We looked at everything that might have triggered it off but could not pin-point anything.

“Then one night, he had too many. He had one massive fit that stopped oxygen going to his brain.

“He had fallen out of the bed that night, and when I went to go and wake him up the next morning, I found him on the floor.”

Only after the St Birinus School pupil’s death in 2002 did Miss James learn three people in Britain die from epilepsy every day.

Now Wantage-based charity Epilepsy Bereaved is launching a national campaign, Spread The Word, to raise awareness of Sudden Unexpected Death in Epilepsy (SUDEP) and help save lives.

Miss James said: “To find my son like that was horrendous.

“It is still tough eight years on, and it always will be. Over that time I have had my ups and downs, and I am still on anti-depressants to keep me going.

“Because it was so sudden, everything was taken away at once.

“He was a good healthy lad. He had done his GCSEs and had just been given a place at college, and he loved the Army Cadets.

“His main focus was to get a car as soon as he could. The day before he died, he had just got his wage packet, and said it was a little bit more money towards the car.”

And she said there must be more openness about the condition to reduce deaths – half of which Epilepsy Bereaved say are avoidable.

She said: “When you talk about epilepsy, people do not want to know. I understand it can be scary for people, but it is better to know and be prepared than to go through what I have gone through.”

Epilepsy Bereaved’s campaign appeal will feature on Radio 4 this week.

Sports presenter John Inverdale made two short appeals yesterday, and will repeat them just before 3.30pm on Thursday.

One in 130 people in the UK have some form of epilepsy.

About 1,000 people die from it every year in the UK. More than 500 are attributed to Sudden Unexpected Death in Epilepsy.

People with epilepsy have a risk of premature death three times higher than that of the general population.

Common triggers of seizures are tiredness and lack of sleep, stress, alcohol, and not taking medication.

Causes of the condition can include structural damage to the brain, from birth, from a stroke, or an infection such as meningitis, or through a head injury.

Causes can also be genetic.

Up to 70 per cent of people could have their epilepsy controlled with anti-epileptic drugs.

St Valentine is the patron saint of people with epilepsy.

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