The parents of a schoolgirl who died after suffering an epileptic seizure in the bath say they want more awareness about the condition.
Ped and Carol Cebrero, from Fulwood, say there was ‘a lack of care’ for their daughter Isabella, 16, who died in June 2018.
Isabella, known as Bella to her friends and family, suffered severe epilepsy and could have between 50 – 100 seizures a day.
She was so unwell she was not able to sit her GCSEs and missed a large part of her final year at Our Lady’s RC High School, Fulwood, Preston.
But her mum said: ““She was such a tough little cookie though, after a seizure she would get up, bruised and battered sometimes, she’d have a cry, dust herself off and get on with whatever she was doing .
“She was so, so loved.”
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An inquest at Preston Coroner’s Court heard Isabella – known as Bella to her family and friends – had suffered ‘startling’ episodes since she was a small child and had been diagnosed with epilepsy after she suffered a seizure on a family holiday in 2013.
She was treated by paediatricians and neurologists at Royal Preston Hospital but despite numerous tests and types of medication, her condition did not improve.
In November 2017 she was referred to a paediatric neurologist at Manchester Children’s Hospital and began investigations to determine whether surgery was a viable option to control her seizures.
But on June 15 2018, Carol returned the family home in Yewlands Drive, Fulwood, to find Bella had suffered a seizure while she was having a bath.
The emergency services were called but Bella was pronounced dead.
Coroner James Newman recorded her cause of death as Sudden Unexpected Death in Epilepsy (SUDEP) and recorded a verdict of natural causes.
But speaking after the inquest, Bella’s dad Ped said: “There was just a lack of care. There was no empathy.
“Unless Isabella was in hospital she was only seeing consultants twice a year.”
Carol said: “You are just left really. What are you supposed to do?”
During the hearing, Sheila Bolger, a family friend whose daughter Christine also has epilepsy, said there was “a national, if not world failing of people who have epilepsy.”
She said: “We are just left as parents to fumble around in the dark. We are not given any support.”
She said no-one had told them about the risk that their children could die from a seizure or suggested surgery as a potential treatment route.
The coroner said: “It is a very dangerous condition.”
Carol and Ped are now trying to raise awareness of epilepsy and have dedicated an award for children who try but struggle at school in Isabella’s name.
Carol said: “It’s a cruel illness that sucks the life out of a sufferer and their loved ones .
“Bella suffered on a daily basis from seizures.
“She just wanted to fit in with her friends. She wouldn’t even say the word epilepsy.
“She loved make-up and her TV programs. She was like any 16-year-old girl.”
“She never wanted any fuss.
“Every morning she’d get up and she would hope that she’d have a seizure free day, as would I more than anything.
“Those seizure free days were the best and we dared to hope that the countless drugs she was on would control the monster that occupied her brain.
“However that day in June last year, the monster took hold and took my baby girl .
“I wouldn’t wish this pain on anyone.”
Carol and Ped are raising money for Young Epilepsy in memory of Bella. You can donate to their page here.