For the family of Sienna Dunion, the first indication that something was amiss came after she asked to return home just five minutes after heading out to play with her scooter.
A happy and excitable four-year-old, she and her older sister had just been told of a trip to Lapland for Christmas, and while she was delighted, she had also complained of feeling “cold and chilly”.
Her parents, Gary and Angelina Dunion, decided to keep her off school on Monday 17 November as she had a rising temperature, but given that she was still playing with her Barbies, they weren’t overly concerned.
On Wednesday morning she became unresponsive, with an emergency trip to A&E in Kettering turning into every parent’s worst nightmare as Sienna was placed into an induced coma and diagnosed with the rare brain disease Acute Necrotising Encephalitis (ANE).
Three weeks later, Sienna’s family are facing the prospect that their daughter will never return to her old self, and that she requires years of intense rehabilitation to learn how to walk and talk again.
ANE is a rare, severe, and potentially fatal brain disorder that causes rapid neurological deterioration following a viral infection, usually caused by flu or Covid-19. Given that there have only been a handful of cases globally, there is no single, universally accepted treatment and management can be challenging.
Speaking to The Independent, Mr Dunion, 41, said: “For us, it’s really important that people can understand this has happened to a really healthy four-year-old girl who had no underlying issues.
“It has completely changed our lives overnight. What started as a flu has turned into a complicated brain disease and the last three weeks have just been horrendous.”
While Sienna had been unwell on the Monday and Tuesday, it was the 19 November when her condition changed for the worse, with Mrs Dunion realising that she was unresponsive when she tried to wake her.
Doctors at A&E had initially thought she was dehydrated after she tested positive for influenza, but a CT scan returned with a few anomalies, including white lesions, while test results were inconclusive.
By 11pm, it was decided she should be transferred to the intensive care unit at Nottingham’s Queen Medical Hospital, where an MRI led to her ANE diagnosis.
Given the rarity of the disease, doctors have created a tailored treatment programme which includes plasma exchange that effectively “washes her brain”.
However on the Saturday, 22 November, an ultrasound revealed that she had large amounts of fluid in her stomach and Sienna had to undergo a surgery to remove 60 per cent of her intestines, in what her father described as the “hardest night” of his life.
She has since had a further two surgeries on her stomach after air was discovered, and has now been given a stoma bag and will have short bowel syndrome for the rest of her life.
“The one guarantee that doctors have made is that she will not be the same person when she wakes up and will have to go through an extensive rehab,” Mr Dunion said.
“She’s awake but doesn’t have a clue what’s going on, she’s floppy, can’t track her eyes, can’t eat.”
Now that she is no longer in an induced coma, the family have been warned she will soon be transferred to a neurology ward with less individual support than received in ICU, and that it is likely she will remain there for several months.
They are now fundraising to ensure she receives the best rehabilitation care, from physiotherapy, speech and language therapy, feeding support and to cover the cost of their home adaptations.
“We have another daughter who is seven years old they are honestly absolute best friends,” he said. “She’s been asking me so many questions ‘where is Sienna, when can we be a family again?’.
“I can’t tell her the severity of what’s going on, and that she won’t be able to speak to her sister for a really long time.”
He added: “She was just the most caring and relaxed four-year-old I’ve ever known. Even when she had a temperature she was checking ours to see that we were okay.
“She’s a social butterfly, she is just with all the different kids all the time, she absolutely loves being with her friends.
“She’s got this infectious belly laugh and we don’t know if we’ll heard it again.”
