Girl with rare brain disease 'fighting like hell'

A girl diagnosed with a rare brain disease after suddenly becoming unresponsive at home has been "fighting like hell", her dad has said.

Four-year-old Sienna Dunion was rushed to hospital two days after she started to feel unwell with flu-like symptoms in November.

After a number of scans, doctors diagnosed her with acute necrotising encephalitis (ANE), a rare disease that causes the brain to swell.

Her father, Gary Dunion, said a fundraising response from the community in Market Harborough, Leicestershire, where he used to play football and currently works, had been "ridiculous".

Gary, 41, said the only guarantee his family has had about his daughter's condition from doctors was that she would "not be the girl we knew" following the illness.

"She's really caring," he said.

"Even when she was getting a temperature on the first couple of days, we were taking her temperature and she would then take our temperature to make sure we're OK. That just sums her up completely.

"She's just the most loving, caring girl. Just a fabulous four-year-old."

Sienna initially complained of feeling unwell on 16 November after her parents surprised her and her sister with tickets to Lapland.

Gary said he and his wife, Angelina, who live in Corby, Northamptonshire, started to realise their daughter was really unwell when she asked to come home from a scooter ride after five minutes.

"She was still laughing, still playing," he said. "We had no concerns at all.

"She went to bed on the Monday and we genuinely thought that by Tuesday, she'd be back in school because she had no temperature again overnight."

Gary said after his wife could not wake Sienna on Wednesday morning, she was rushed to Kettering Hospital, where doctors gave her fluids, believing she was dehydrated.

However, scans revealed an issue with her brain and she was put into an induced coma and taken to the Queen's Medical Centre in Nottingham for further tests.

Doctors diagnosed her with ANE, a very rare brain disease, which typically happens in infancy or early childhood.

The disease happens when an abnormal immune response to an illness, such as flu, Covid-19 or another infection, causes the brain to swell.

Doctors confirmed Sienna had flu when she became unwell.

Gary says three weeks on, following surgery to remove 60% of her intestines due to what are believed to be complications from her treatment, Sienna remains in hospital.

She has been breathing on her own for a week and is beginning to track with her eyes, her dad added.

"She's fighting like hell," Gary said. "Every time we mention a family member or mention a friend from school, she's trying to cry.

"So there's something that's triggering what's going on.

"We took her sister, Adriana, into the hospital last night for the first time.

"She read some books to her and sat and held her hand.

"Explaining to a seven-year-old that your sister won't be able to talk back to you is pretty tough."

The family is now beginning to plan for the future, knowing that Sienna will have a long road to recovery.

Gary set up a fundraising page to help the family deal financially with the future.

Within 12 hours, the page reached £50,000 and has now surpassed the £100,000 mark.

Gary said the response, including fundraising from his former football team Harborough Town, had been "ridiculous".

"It's just unbelievable what they've done - they've really rallied around us," he said.

"Harborough has always been a giving community and they look after their own."

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