Epilepsy affects more than 450,000 people in the UK and up to 70 in every 100 can have their illness fully controlled with medication.
But for a few it can prove fatal.
Katie Baldwin met a family from Leeds who suffered such a tragedy.
IT was something that Matthew Kirk just coped with.
Daily seizures were part of his life and a situation his family had got used to.
But they never thought for a minute that Matthew’s epilepsy would lead to his death, aged just 31.
It was April 2009 when Mark Kirk came home from work and made the horrendous discovery that his brother had died.
Matthew had been on his own all day and his family have tried to piece together what happened.
Steven, youngest of the four brothers, said: “From what we have worked out, Matthew got up at about 9am and went downstairs for a cig in the back garden.”
Often they would take a chair out so he could sit down in case he had a seizure.
“That day he decided not to sit on the chair and when he had the fit, he had fallen back and banged his head. It just happened,” Steven said.
Steven, who is serving in the Army with the Royal Engineers, was away in Canada when he got a phone call with the terrible news.
His other brother Michael was at work and rushed to the house in New Farnley, Leeds, where Matthew lived with their parents Maria and Mick. They had been on holiday at the time.
Because the death was so sudden and unexplained, the police were called and had to investigate what had happened.
Though it was necessary, this was very difficult for the family to deal with.
Michael said: “At one point they wanted to just leave Matthew outside until the next day, which would have just been awful. Thankfully they decided they could take him away. My last time seeing him was zipped up in a black bag on a trolley, an image which I just can’t get rid of now.”
It took weeks for tests to be carried out to confirm how Matthew had died, but his family suspected his epilepsy must have something to do with it.
Matthew had his first fit when he was about 12 as the brothers played computer games on their Amstrad.
They were terrified and Matthew was taken away in an ambulance.
Steven said it took some time for him to be diagnosed with epilepsy but by the time he was in his 20s, the seizures were more frequent.
“Every day he was having a fit, it was a good day if he didn’t.
“He did not just have epilepsy, he also had ezcema and asthma. He wasn’t given a good start in life but he had a heart of gold.”
Matthew couldn’t work because of his condition, which also meant there were many other things he missed out on, but his brothers say it never got him down.
They all got used to him having seizures and knew how to deal with them.
They were especially safety-conscious after he had one in the bath and Steven and their dad had to break the locked door down.
But the possibility of his epilepsy potentially being fatal was one they’d never considered.
Steven, 29, said: “We never thought we’d lose him through an epileptic fit.”
Michael added: “It never crossed our mind that he would die from something like that.”
They’d never heard of Sudden Unexpected Death in Epilepsy (SUDEP) until they were told that was the cause of his death.
According to Yeadon-based charity Epilepsy Action, it is estimated that SUDEP causes about 500 deaths a year. Though most people with epilepsy recover well after a seizure, some people die of an injury sustained during it and others may die with no obvious cause of death.
When there is no reason why someone has died, it is attributed to SUDEP.
The causes are unclear, but research suggests having a seizure may cause changes in the person’s heartbeat or breathing and occasionally this may cause the person to stop breathing and not start again.
Predicting those at risk is difficult but uncontrolled tonic-clonic seizures are a big risk factor, as is having frequent seizures.
Since Matthew’s death, his family have missed him hugely.
Michael, 31, said: “I tend to miss him at big occasions like family gatherings.
“We all sit in a line of four chairs and I still turned round to make sure there was enough room for Matthew to sit down.”
Steven, who lives in New Farnley with his partner and daughter, said he misses Matthew “an awful lot” as well.
So when Michael, a systems manager, decided to do a charity running event and the first one he found was for Epilepsy Action, it seemed like a big coincidence.
He asked Steven who immediately agreed to run the Bradford 10k road race with him.
The brothers have been in training for Sunday’s event and though Michael, who lives in Morley with his wife and two daughters, has sustained an injury, he’s still determined to complete it.
They said they wanted to take part to honour Matthew and keep his memory alive.
Raising more awareness of SUDEP to help other families affected by epilepsy is also very important to them.
Michael said: “It might help people if they know it’s a possibility. If they know more about it they might be able to do something.”
* To support Michael and Steven’s fundraising, visit: www.justgiving.com/Michael-Kirk0