A MUM died suddenly just steps from her newborn’s crib when her brain suddenly shut down due to a rare phenomenon.
Daniella Jane, 31, was found dead in bed by her partner Reggie, 29, next to their now nine-month-old son Ronnie in January.
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Daniella Jane died just steps from her newborn son’s crib Credit: PA
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Epileptic mom suddenly passed away from a rare and inexplicable phenomenon Credits: PA
Last week, her mum Kerry Cook received the results of Danielle’s post-mortem, which revealed she died of sudden unexpected death from epilepsy (SUDEP).
The term describes cases where there is no clear reason why a person with epilepsy has died, according to the charity Epilepsy Action.
Kerry said she didn’t know anything about SUDEP until a few months before her daughter died, despite raising two children with epilepsy and visiting many hospitals over several decades.
If she had known about the condition, which kills around 550 people in the UK each year, the devastated mum said she would have been more present for Daniella, who was diagnosed with epilepsy aged nine.
At the worst times, she had up to 30 seizures a month.
Kerry’s younger daughter Georgia, 26, also has epilepsy and now fears she could suffer the same fate as her sister.
Kerry, 51, from Essex, said: “Both my daughters got epilepsy; one at 21 and my other daughter at 13.
“All this time I have heard the word SUDEP, but no one has ever explained it to me or what the risks are involved.
“Then on January 24 this year at 8:20 a.m. I received a phone call that my daughter had passed away.
“If I had known the dangers, I would have left and moved in with my daughter.
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“All the “ifs” and “no”s bothered me a lot, but I just wish someone had pointed out the seriousness of the situation.
“Even the funeral home has never heard of SUDEP.”
Daniella was nine years old when she had her first seizure.
“She was sitting on the floor playing with her cousins and she just fell backwards,” Kerry said.
“She had a seizure, twitching, shaking and making very strange noises, and it lasted for three or four minutes.”
Over the next few years, Daniella had seizures 20 or 30 times a month, often seriously injuring herself in the process.
“There was no trigger or warning in Danielle’s case,” Kerry said.
– They would just hit her and she would fall to the floor.
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Daniella was diagnosed with epilepsy at the age of nine, but didn’t hear about SUDEP until her 30s Credit: PA
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Her mum Kerry said she would have moved in with her daughter if she had known about SUDEPCredit: PA
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Daniella passed away on January 24th and her autopsy was released in AprilCredit: PA
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Daniella with her partner Reggie and their son Ronnie, now nine months Credit: PA
The young man tried different medicines, which sometimes briefly reduced the number of seizures, but they soon returned.
At the age of 17, Daniella did not want the condition to rule her life and decided to move into her own one-bedroom flat in Romford.
She worked several jobs, including teaching assistant and bartending, but each time her epilepsy got in the way and she was forced to quit.
Then, when Daniella became pregnant in 2022, her seizures increased and doctors advised her to have a C-section due to fears she might have complications during the birth.
After welcoming Ronnie on July 23, Kerry and Reggie kept a close eye on Daniella, whose seizures were now “out of control”.
“She went home and her partner Reggie did his best to look after her but obviously there were bills to pay so he couldn’t be with her all the time,” her mum said.
Daniella contacted Queen’s Hospital in Romford to request genetic testing to shed light on why her seizures were getting worse.
A few weeks later, she received a letter saying that there was no need for examinations, but that she was at risk of SUDEP.
Although rare, the Epilepsy Foundation lists SUDEP as the leading cause of death in people with uncontrolled seizures.
My daughter’s brain just completely shut down
Kerry CookMom
Kerry began researching online in September 2023 and suggested her daughter talk to a specialist about the condition, which most often occurs at night or during sleep.
Two weeks before Daniella was due to have her hospital appointment, Kerry received a devastating phone call from Reggie.
“The 23rd “In January, her partner went to work to do the night shift, and Daniella was alone with the baby,” Kerry said.
“Now they tell me my daughter’s brain has completely shut down.”
Kerry said her daughter was wearing some kind of seizure-detecting smartwatch at the time of her death, but it was broken.
On April 20, Danielle’s autopsy report “unequivocally confirmed” that SUDEP was the cause of death.
Georgia, who lives one street away from her mom, now fears she too could be in danger.
‘EXTREMELY SCARY’
“She’s afraid of being alone and her mental health is going downhill because she’s constantly overthinking her fears,” Kerry said.
“He keeps telling me: Mom, I’ve had epilepsy for 13 years, I’m going to die of SUDEP, who’s going to find me?”
“It’s absolutely heartbreaking. It’s extremely scary, I’m a nervous wreck.
“She’s already suffered some pretty horrific injuries, like losing four of her front teeth when she hit her face against a brick wall.”
What is SUDEP?
SUDEP is the sudden, unexpected death of someone with epilepsy.
They are otherwise healthy and no other cause of death can be found.
Doctors know that SUDEP is associated with seizures, but no one knows the exact cause and there may not be a single explanation.
The condition is rare and affects around 550 adults with epilepsy in the UK each year.
Some things are thought to put you at increased risk. These include uncontrolled seizures, sleep seizures, irregular medication, alcohol or drug addiction, and living alone.
Seizure alarms or monitors, sleeping on your back and using safety pillows can help, experts say.
Source: Action against epilepsy
Kerry launched a petition urging people diagnosed with epilepsy to be informed about the “risks and dangers” of SUDEP.
“From the first second someone is diagnosed with epilepsy, they should be consulted with a specialist to explain the risks and if there is anything they can do to prevent (SUDEP),” Kerry said.
“You need to learn the best way to manage your seizures by talking to your doctors and getting support.
“When Daniella died, I donated my daughter’s brain to the Epilepsy Society to research and see if they could find answers.
“Why did she have SUDEP? Why did her brain just shut down?”
Rebekah Smith, deputy chief executive of Epilepsy Action, said: “We know that 87 per cent of people with epilepsy told us that their condition had a negative impact on their mental health.
“This in turn can prevent them from seeking the support they need to safely manage their condition and look after themselves – all of which can increase the risk of sudden unexpected death in epilepsy (SUDEP).
“SUDEP is rare and affects approximately one in every 1,000 adults with epilepsy each year.
“A person’s individual level of risk will depend on how well their seizures are controlled, but we know there are some factors that can increase risks such as not taking epilepsy medication as prescribed.”
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Reggie found his partner dead in bed after a night shift Credit: PA
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Kerry with her daughter, who has moved into her own one-bedroom flat in RomfordCredit: PA
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Source: HIS Education