"The monster took hold and took my child" … the anger of the mother for the lack of care for her dead daughter after suffering 100 seizures a day

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The mother of a 16-year-old student who died as a result of her severe epilepsy condemned the failures of the NHS to address what she called "the monster that took her baby".

Isabella Cebrero suffered up to 100 seizures a day after being diagnosed with epilepsy when she was eight years old.

But despite having been helped by local doctors, including an MRI, his condition has worsened and his crises have become "aggressive, important and frequent".

Despite not wanting to make a fuss, the young man described as a "hard cookie" by his family found it difficult to continue with his GCSEs and was unable to complete his mock examinations due to the severity of the crises.

On June 15th, the teenager – known as Bella – was found dead in the family bathroom at home in Fulwood, Preston, after he fell ill after entering the water.

She was not drowned but the doctors concluded that she suffered a "sudden and unexpected death in the epilepsy". One of the 500 people will die every year due to the condition.

Following an investigation, Bella's mother, Carol, stated: & # 39; & # 39; Epilepsy is a cruel disease that sucks the life of a patient and his loved ones and Bella has suffered from convulsions daily.



Isabella Cebrero had been seen by consultant neurologists since she was eight, but her condition worsened

"After an attack he would get up, bruised and sometimes mistreated. He would have cried, dusted himself up and gone on with whatever he was doing. He never wanted to make a fuss.

& # 39; & # 39; Every morning he got up and hoped to have a day without convulsions, as I would do more than anything else.

"Those days without convulsions were the best and we had the courage to hope that the countless drugs she was taking would control the monster that occupied her brain. However that June day of last year, the monster took hold and took my baby. "



Isabella Cebrero, 16, pictured with her mother Carol

Ms. Cebrero added: "It was a hard biscuit – in reality he would never have said the word" epilepsy ". He just wanted to be normal and fit in. He was in all the TV and make-up programs.

"We want to file a complaint because of lack of care. There was no empathy there unless he was in the hospital for long periods of time. There were only assessments going on twice a year – although he was having between 50 and 100 seizures around day. & # 39; & # 39;

Bella, who studied at the Roman Catholic High School of Our Ladys in Preston, had her first attack during a family vacation in 2011 and was sent to the Royal Preston Hospital.



Isabella Cebrero, 16, also known as Bella, died after suffering an epileptic fit

His mother said at the hearing: & # 39; & # 39; At nine she was referred to a neurologist and prescribed medication, but despite being on a number of them there have never been any significant improvements in her attacks.

"In 2017 he spent a period in the hospital for severe episodes of convulsions and spent a period in the high dependency unit. He tried to keep the school but it was difficult because of his attacks that were becoming more frequent.

"On June 14, I left for work at 7.15am. Bella slept and had an attack during the night. I arrived home at 4.15pm and got our tea. In the evening he was wearing makeup and fake tan, like girls do. He went to take a bath at 7 pm and then returned to his room. She had gone to bed and there were no worries.



Isabella has been described as a "hard biscuit" by her family

"On June 15th I woke up and went to check it, there were no signs of convulsions during that night. I returned at 6.30 and she was still asleep. At 4 pm I received a call lost by my son, he couldn't get into the property, so I tried to send an SMS to Bella but she didn't answer. I left and returned home around 4.15pm.

"I couldn't find Bella downstairs and I could see the bathroom door closed and I thought she was using the bathroom. I screamed at her and there was no answer. Then I got worried and forced the opening of the door and she was in the bathtub.

Bella's father, James, a chef known as & # 39; Ped & # 39; said: "From the age of 8, Bella went to a consultant pediatrician at the Royal Preston Hospital and was visited regularly from pediatric consultant neurologists. But his condition worsened over time and Bella found the school difficult.

"Over time he has had different types of epilepsy. There have been many EEG investigations and scans and she was taking different types of drugs, but despite this she worked hard at school.



Isabella Cebrero: "Every morning she got up and hoped to have a day without convulsions, as I would have done more than anything else"

"Because of the convulsions he was running out and he stopped sleeping. We tried several things to relax him. He was coming to his fake school tests and there was pressure on her. During this time he suffered from 30 to 40 attacks per day.

"In November he had increased convulsions. This was difficult for her. Things were influencing his memory and his ability to remember facts. She was just a normal girl. She liked social media and talking to her friends on Snapchat.

"On June 15th I got up and went to her room to check that she was okay, then I returned with her drink and her medicine, then I took a bath. He got out of bed later that morning and I left for work. I sent her a message at 11am to see if she was okay but I didn't get a reply.

"I took a break at 4:00 pm and called Bella at home and once again I received no answer. It was only later when I got home and found that Bella was found in the bathroom."

Sheila Bolger, the mother of one of Bella's friends, said at the hearing: "My daughter Christina has epilepsy and we were never told that my daughter would die. I found out only when he explained what Bella was going through.

"There is a national, if not global, failure for people with epilepsy and we are simply left as parents to tinker in the dark. We are given no support, no help or advice.

"There is no known epilepsy nurse to contact. Support is absolutely frightening and yet it is a child who wakes up every day, who now knows from one second to the other, what they are going through during an attack .

"My daughter is 17 now. On his last day of school he discovered that Bella was dead. I don't think it should have happened to Bella and I'm upset.

"I'm scared that the hospital has no support or information and the fact that these children only get a hospital appointment every six months is scary.



Isabella Cebrero, 16 also known as Bella, pictured with her father Ped

"They are stuck with drugs that do everything. They are trying to go to school and try to adapt to their friends. It's a national problem with epilepsy and we need the right support."

The professor. Timothy Dawson, a consultant pathologist, said: "Bella had a rather severe epilepsy that was difficult to control. About 500 deaths per year are attributed to epilepsy, but when it comes to death caused by epilepsy, not much is understood.

"Now there is an understanding of" sudden and unexpected death in epilepsy "and I would suggest that the medical cause of death is possible sudden and unexpected death in epilepsy. There is no evidence to suggest that 39; drowning caused his death. "

Dr. Christian de Goede, a consultant pediatrician who treated Bella, said: "The monitoring of epilepsy is more a form of art than a science. He is trying to find the best drugs that control seizures that allow people to continue life without causing them problems with side effects.

"In five years his epilepsy has changed and become more prominent and aggressive. It was not until 2017 that he developed toxic convulsions.

"These last from 30 seconds to two minutes. He was doing further brain wave tests. Surgery can be curative but you have to think, how can you make people with epilepsy live with a better chance?

"It was a complex situation. Epilepsy is rather difficult to understand. Many children can develop epilepsy but then grow from it. It was unusual because she was a healthy, normal young woman who was afflicted with it. "

Dr. Hui Jee Tan, consultant neurologist, said: "Surgery was still to be considered, but the process required tests to capture the seizure. We arranged a scan, but it didn't help to find the suspected area. We knew the intervention would be evasive and could increase the risk of death. & # 39; & # 39;

Recording a conclusion of natural causes, coroner James Newman said, "Bella's condition has really consumed. When a young woman lives with this condition for a substantial period of her life, there may be a light at the end of the tunnel – but it continues and continues.

"I would like to highlight the risk of death with epilepsy. I can't say with an early diagnosis that it could have made a difference, but I believe that Bella died because of epilepsy. From an early age, episodes of epilepsy have undoubtedly brought them to light. She started undergoing numerous tests and was given numerous drugs to try to control it.

"However, at the time of his death he was unable to undergo any type of surgery to improve epilepsy."

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