At first glance, Eden Dora Goldman looks like any other nine-year-old girl. But in reality the Sheffield youngster struggles every day with the effects of a near-fatal condition, making tasks she used to find easy an upsetting challenge.
Eden, from Dore, was hours away from death after being struck with encephalitis, an illness which causes dangerous inflammation of the brain.
Following emergency treatment the schoolgirl pulled through – but the condition left her with an acquired brain injury which has slowed her development.
Mum Petrina Goldman said her daughter’s future prospects are uncertain and that she felt ‘lost and isolated’ following her child’s ordeal.
Now Petrina, a jewellery saleswoman, and Eden’s dad Phil, training facilities manager for Doncaster Rovers, have launched a charity called the Eden Dora Trust.
The trust aims to raise awareness of encephalitis, as well as funding research and training for adults who work with children faced with similar problems.
Already the charity has attracted top patrons, including One Direction’s Louis Tomlinson and former England cricket captain Freddie Flintoff, while the trust’s first big fundraising event – a family fun day with a host of activities– is happening on Sunday in Dore.
“Acquired brain injury is a hidden illness and affects every sufferer differently,” said Petrina.
“She looks ‘normal’, but for Eden the simplest task is a huge challenge. She quickly gets extremely mentally tired. Getting through every single day is a struggle.
“She takes longer to process information and can’t ride a bike, for example. She used to love art, but has started to shy away from that. She’s starting to feel more and more like a failure.”
Eden developed encephalitis three-and-a-half years ago. There are several types of the illness with different causes, but the brain inflammation is often triggered simply by an infection from a common virus.
Petrina said she had kept her daughter off school as she seemed ‘a little bit poorly’, but later the same day she suffered a horrifying seizure while the pair were lying on the settee watching a film.
“It was just awful. I could see in her eyes just how terrified she was. Then she fell completely unconscious.”
Eden was rushed straight to Sheffield Children’s Hospital.
“A well-informed doctor thought to start her on some very specific medication that sufferers of encephalitis need to fight it,” said Petrina.
“If she hadn’t started on that medication she wouldn’t be with us now. She would have been dead within a couple of hours.”
Eden needed to relearn how to walk and talk, and it took weeks until she was well enough to return home. She still attends the children’s hospital’s Ryegate Centre in Broomhill for therapy.
“I have still got my child, in physical form, but she is different emotionally, physiologically, behaviourally and intellectually,” said Petrina.
“I wasn’t prepared for that – I don’t suppose you ever could be.”
Her older brother Oscar, 14, has been ‘amazingly supportive’ but Eden, who attends Dore Primary School, is ‘very aware’ of how different she is to her classmates, Petrina added.
“I knew I wanted to raise awareness to help people encountering the same situation,” the mum said.
The fun day is from midday until 4pm on Sunday at Far Nova Livery Yard on Shorts Lane, featuring a bouncy castle, stalls, food, children’s entertainment and a prize raffle.
Tickets cost £3 for adults and £2 for children.
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