A HEARTBROKEN mum has paid tribute to her teenage son who died without warning, just weeks before he was due to giver her away at her wedding.
Stuart Waters-Manning always had “a smile on his face” was just 19 when he passed away in May this year, suffering a deadly seizure while studying for an exam.
With his mum’s nuptials set for a couple weeks later, the teen had been planning to give her away.
Stuart, from North Hykeham, Lincolnshire, was diagnosed with epilepsy and autism in 2018 when he was 13 years old.
Since then, he’d suffered from occasional seizures, which tended to occur during the night.
The teen hadn’t had one for over a year.
But on the day of his death – May 15 – Stuart suffered a seizure that caused his heart to stop.
An investigation into Stuart’s death found that it was caused by Sudden Unexpected Death in Epilepsy (SUDEP).
SUDEP is when someone who has epilepsy dies suddenly during or following a seizure and no other cause of death can be found.
According to the charity SUDEP Action, about one in 1,000 people with epilepsy lose their lives to the rare phenomenon every year.
Despite having seen many specialists about Stuart’s epilepsy over the years, his mum Amanda Waters, 41, said they had never been warned about SUDEP.
“It’s unbelievable that nobody even let us know about it,” she told Lincolnshire Live.
She now hopes to raise awareness around the condition.
Stuart suffered a seizure over the Mother’s Day weekend, but before that he hadn’t had one in over a year and they tended to be “very rare”.
Amanda said: “He can usually tell when they are coming on as he gets a taste in his mouth or it’s almost like a stroke with his lips shaking.
“That morning he was absolutely fine. We were sat in the lounge having a chat with him at lunchtime, then he went up to do some revision for an exam he had the next day.”
His family found him unresponsive around 5pm and paramedics pronounced him dead when they arrived shortly after at 5:45pm.
There was always a smile on his face. He had a contagious laugh. He had such a lovely personality
Amanda Waters
His mum said: “When he was having his seizure he couldn’t come out of it and his heart stopped.
“The sad thing is we fly out in two weeks to get married and he was giving me away, so he has gone in his suit.”
Stuart’s funeral was held on June 26 and was attended by around 250 people.
More than £2,000 has been raised in his honour for LIVES and Epilepsy Action.
Amanda said: “Stuart was one of those that could just cheer you up in a second, or annoy you just as quickly.
“There was always a smile on his face. He had a contagious laugh. He had such a lovely personality.”
She described Stuart as being “very sociable.”
The 19-year-old was also a sports lover and had hoped to work as coach, his mum shared.
SUDEP is the sudden unexpected death of someone with epilepsy who was previously well and where the post-mortem can't find another cause of death.
No one knows the exact cause of SUDEP and there may be no single explanation.
It’s thought that a seizure may sometimes lead to changes in the person’s heart rate or breathing.
This could cause the person to stop breathing or their heart to stop beating.
SUDEP is rare, affecting around 1 in every 1,000 adults with epilepsy each year.
Someone’s risk will depend on what type of seizures they have and how well-controlled they are.
Research shows you might be more at risk if you suffer from tonic-clonic seizures: tonic means stiffening, and clonic means rhythmical jerking.
SUDEP often happens at night, which suggests that you may be at more risk of SUDEP if you have seizures during sleep.
There’s also some evidence that people who don’t take their epilepsy medicine regularly, as prescribed by their doctor, have an increased risk of SUDEP.
Source: Epilepsy Action
Amanda said: “He said he wanted to be a sports teacher or a sports coach, but as he had autism he couldn’t deal with the noise of all the young kids but he just really enjoyed playing it.”
Stuart had participated in championships as part of the Invictus football team, while Amanda said his local sports club was “like a second home to him”.
Stuart’s family are hoping to organise an annual Stu-cup to raise money for a charity each year in his honour, with the first event hopefully taking place in 2025 for SUDEP Action.
Amanda explained: “We as a family will buy the cup every year and the proceeds will all go to a charity, but we still have to finalise it all.”
