‘We’re completely broken’ - Ettie, 5, left with permanent brain injury after devastating series of epileptic fits
- Credit: Archant
A heartbroken family have described how “our world came crashing down” as their beloved five-year-old suffered repeated epileptic fits which later left her with a permanent brain injury.
Ettie Curtis' parents fear for her future after as many as 13 seizures an hour damaged the frontal lobe part of her brain.
Although her family were originally told Ettie's fits were febrile, with no underlying health issues, they soon escalated into uncontrollable multiple fits a day.
With her family panicking, her dad Simon, 37, was called home from active military service in Iraq to be by his daughter's side as she was rushed into hospital for 24-7 care.
But despite the heroic efforts at doctors at Cambridge's Addenbrooke's Hospital, the Hollesley Primary School pupil has suffered permanent damage to the part of the brain which controls emotions, memory, language and judgement.
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"It changes the dynamics of how we know Ettie to be," devastated mum Klara Curtis said.
Rocked by what has happened, the community has now rallied round to help - with the Over the Rainbow Children's Charity pledging to raise £10,000 for equipment the Curtis family need when Ettie is able to return home.
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Yet in spite of everything, 40-year-old Klara says she is "bursting with pride" at how her "cheeky little chappie" has coped with everything thrown at her at such a young age.
'It was devastating'
Before the seizures began in March this year, Klara said Ettie "was a completely normal child", adding: "She's always been very articulate and always been a cheeky little chappie."
But one Sunday afternoon at their home in Sutton Heath, near Woodbridge, everything changed.
"I went to sit on the sofa and sat next to her," Klara said.
"I saw what I thought was her whole body shudder."
Within moments Ettie, who had only just turned five, was having a "full blown seizure".
She was still gripped by the seizure when paramedics arrived five minutes later.
"It was devastating," Klara said.
"I just remember feeling sheer panic and thinking: 'Oh my god, what's wrong with my daughter?'
"As a parent, you go through every question possible in your head.
"Right there and then, it was just devastation and felt like our world came crashing down."
'It became very scary'
At first, it was thought the seizure was simply down to high blood pressure and would not cause a long-term problem.
But after several more seizures, Ettie was eventually taken to Ipswich Hospital where she suffered eight severe fits in a day.
That rose to 16 a day before epilepsy medication seemed to bring the fits under control.
The Curtis family hoped for the best after Ettie remained clear of seizures for eight days - but Klara said: "Unfortunately she then had a nosedive and fell back into these clusters of seizures."
Taken by blue light ambulance to Addenbrooke's on July 24, where the family have remained ever since, she suffered 23 seizures in one day - and then as many as 13 in an hour.
Having been allowed to return home from Iraq on compassionate leave, Simon - a sergeant in the Royal Engineers bomb disposal team based at Wimbish - has been by his daughter's side in ever since.
"It became very scary," Klara said.
"She was seizing a horrific amount of times a day.
"They told us we were looking at a very complex form of epilepsy.
"The medication wasn't working and they had to start her completely different medication to try and control the seizures."
Ettie was put on a ketogenic diet by doctors at Addenbrooke's, which reduces carbohydrate intake in a bid to bring severe epilepsy under control.
It seems to have worked - but on Friday, August 16 Klara and Simon were told the frontal lobe part of Ettie's brain had been permanently damaged by the repeated seizures.
What it will mean long-term is unclear, but relatives have already noticed that Ettie now has reduced awareness of danger - meaning they fear for her future.
The frontal lobe is also the key part of the brain for controlling emotions, which could lead to difficulty controlling desires, thoughts and feelings.
Ettie is also being referred to Great Ormond Street Hospital in London.
"I don't think we can look at this long-term at the moment," said Klara.
"We're going day by day because it is the only way to live right now.
"I'd love to sit her and say I can't wait for the day when she'll go back to school. We just don't know if and when that will ever happen.
"All we know is that we believe, in time, the love and support we have for each other as a family is what's going to get us through.
"We have to have a lot of hope."
'She's my absolute hero'
Of the news of Ettie's frontal lobe damage, Klara said they feel: "Completely broken. They're the only words we have to use - we're completely broken."
She said they family is blessed to have a network of kind and supportive friends - but said: "Everyone has been shocked by it. Everyone has been dumbfounded.
"Everyone who knows Ettie knows what a great little girl she is. She's very articulate, very cheeky and loves good humour.
"I'm just bursting with pride because she's amazing.
"She lets the doctors do whatever is needed. She never fights, she never cries. She's my absolute hero."
The Over the Rainbow Children's Charity, which supports families of young people with a serious illness or disability, has pledged to raise £10,000 for Ettie Curtis.
Bev Lambert, from the charity which was founded in Suffolk in 2015, said that what had happened to Ettie is "so very sad".
She added: "This is such a sad case. This little girl was a healthy, go-lucky little girl with no medical history."
The money will go towards equipment the family needs to care for Ettie once she has returned home.
For more information about the charity or how to donate, call 0800 180 4118 or email the charity here.