Epileptic mum died feet from son’s cot and family fear sister is next | UK News
A mum with epilepsy died just feet from her newborn son’s cot in a sudden and unexplained death and now her family fear her sister could be next.
Daniella Jane, 31, was found dead in her bed in Romford, East London on January 24 this year by her partner Reggie, 29.
Their baby Ronnie, now nine months, had been lying in cot just a few feet away at the time.
The results from a post-mortem, which Daniella’s mum, Kerry Cook, 51, received last week, showed she died of a sudden unexpected death in epilepsy, also known as SUDEP.
SUDEP describes when there is no clear reason why a person with epilepsy has died, according to charity Epilepsy Action.
Daniella’s younger sister, Georgia, 26, also has epilepsy and the family are terrified she could suffer the same fate.
Kerry said she and her daughters had known little about SUDEP, until Daniella was told in a letter from medics last year she was at risk of it.
Her mum suggested she speak to a specialist about the matter and Daniella booked an appointment that was due two weeks after her death.
Now Kerry has launched a petition on Change.org calling for people who are diagnosed with epilepsy to be automatically provided with information about the risks of SUDEP.
She said: ‘Both of my daughters got epilepsy, one of them (Daniella) had it for 21 years and my other daughter’s had it for 13 years.
‘In all that time, I had heard of the word SUDEP but never had anyone explain it to me or what risks were involved.
‘If I had known the dangers, I would have gone and moved in with my daughter.
‘All of the ifs and buts have tormented me greatly, but I just wish that someone would have highlighted the severity of the situation.
‘Even the funeral home had never heard of SUDEP.’
Kerry received a devastating call from Reggie on January 24 to say he had returned from a nightshift to find Daniella dead in their bed.
She said: ‘What I’ve been told now is that my daughter’s brain just completely switched off.’
Daniella was nine when she had her first seizure.
‘She was sitting on the floor playing with her cousins and just fell backwards,’ said Kerry.
‘She was having a fit, jerking, shaking and making very strange noises, and this lasted for three or four minutes.’
Over the next few years, Daniella had seizures 20 or 30 times a month, often badly injuring herself in the process.
‘In Daniella’s case there were no triggers or warnings,’ said Kerry.
‘Her seizures would just hit her and she would drop to the floor.’
She tried different medication, which sometimes helped reduce the number of seizures for a while, but they soon returned.
As an adult she tried working several jobs, including as teaching assistant and a bartender but was always forced to quit because of her condition.
Then when Daniella became pregnant in 2022, her seizures intensified and doctors advised her to have a caesarean section in case there were complications giving birth.
After welcoming Ronnie on July 23, Kerry and Reggie kept a close eye on Daniella whose seizures were ‘out of control’.
‘She went home and her partner Reggie did everything he could to look after her, but obviously bills have to get paid so he could not be with her all the time,’ said Kerry.
Daniella contacted Queen’s Hospital in Romford and asked about having genetic testing in the hope of shedding light on why her fits were getting worse.
A few weeks later, she received a letter saying there was no need for genetic testing and that because her seizures were uncontrolled, meaning medication did not alleviate them, Daniella was at risk of SUDEP.
Kerry began researching online and it was then she urged her daughter to get in touch with a specialist about the condition, which most often happens at night or when the person is asleep.
Daniella had been wearing a special seizure detection device when she died, but it was broken and did not give off a warning signal.
Daniella began having seizures when she was nine (Picture: Handout/PA Real Life/PA Wire)
Kerry said Georgia, who lives a street away from her mum, is now consumed by the thought she will die the same way.
‘She’s scared to be left alone and her mental health is going through the roof because she’s constantly overthinking the fears,’ Kerry explained.
‘She just keeps saying to me, “Mum, I’ve had epilepsy for 13 years, I’m going to die of SUDEP, who’s going to find me?”
‘It’s just heartbreaking, absolutely heartbreaking. It’s extremely scary, I’m a nervous wreck.’
Kerry has donated Daniella’s brain to the Epilepsy Society so they can do research and hopefully find out why she was a victim of SUDEP and why her brain ‘just switched off’.
Rebekah Smith, deputy chief executive at Epilepsy Action, said: ‘We know 87% of people with epilepsy have told us their condition has had a negative impact on their mental health.
‘This in turn can prevent them from seeking the support they need to manage their condition safely and look after themselves – all which can increase the risk of sudden unexpected death in epilepsy (SUDEP).
‘SUDEP is rare, affecting around one in every 1,000 adults with epilepsy each year.
‘A person’s individual level of risk will depend on how well controlled their seizures are, but we know that there are some factors which can increase the risks such as not taking epilepsy medication as prescribed.’
To support Kerry’s campaign and sign the petition visit her Change.org page. More information on SUDEP can be found on Epilepsy Action’s website here.
Last month 29-year–old mum Madeleine Dippnall said her epilepsy had been misdiagnosed as ‘mental health problems’.
