Barking family's shock over sons sudden death
PUBLISHED: 13:29 04 June 2009 | UPDATED: 11:04 11 August 2010
THE FAMILY of Sean Watson say his death came as a massive shock because doctors failed to warn them about the risks surrounding epilepsy. His mother, Amanda Alwyn, said she had never heard of Sudden Unexpected Death in Epilepsy and never dreamed she wo
THE FAMILY of Sean Watson say his death came as a massive shock because doctors failed to warn them about the risks surrounding epilepsy.
His mother, Amanda Alwyn, said she had never heard of Sudden Unexpected Death in Epilepsy and "never dreamed" she would suffer the tragic loss of her son at such a young age.
Ms Alwyn and Sean's father Andrew Watson (the two are separated) hope that by speaking publicly they can raise awareness about the syndrome, which kills around 500 people a year.
Although little is known about the causes of SUDEP, some experts believe there are ways of lowering the risk of it happening. These include taking the medication regularly and making sure someone is close by for at least 20 minutes after a seizure ends.
Ms Alwyn, whose 14-year-old son Scott also suffers from epilepsy, says Sean was a fit and bright teenager, who they assumed would lead a long and healthy life.
"From the age of ten Sean would have about one or two fits a year in his sleep, which he'd never remember but would leave him with a severe head ache. But apart from that he was like any other 17-year-old.
"His epilepsy never seemed that serious and we were more worried about Scott, who has around 40 seizures a day."
Ms Alwyn says Sean had read something on the internet about people dying from an epilepsy related syndrome.
"He spoke to his doctor at King George Hospital, who assured him that he would not die as a result of epilepsy."
She added: "I just wish someone would have told us about SUDEP, because then maybe we could have done something to prevent it, or even if we couldn't have done anything then at least we would have been more prepared for his death."
Not only were the family left in the dark about SUDEP, they also feel they were given little information about epilepsy as a condition and were offered very little practical or emotional support after their son's were diagnosed.
Ms Alwyn said: "Sean generally didn't need much help, but Scott's condition is much worse. I have asked for help many times, but it is only since Sean's death that the hospital and social workers have started listening to me.
Ms Alwyn, whose sister died two years ago in similar circumstances to Sean, has now been told her daughter may also have epilepsy.
"It's been a very difficult time for us recently. We miss Sean terribly and I'm obviously worried about Scott and my daughter. Sometimes I just want to scream out loud, but I have to focus on my family and hopefully by talking about what's happened we can make a difference - even if just a small difference."
The family are now hoping to donate £1000 of Sean's savings to an epilepsy charity.
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