Flu turns life‑threatening for Corby girl as parents call for better understanding of rare illness

The family of four‑year‑old Sienna Dunion, from Corby, is campaigning for better awareness and support for parents whose children are diagnosed with rare and life‑changing illnesses.

On November 19th of last year, Sienna was diagnosed with Acute Necrotising Encephalitis (ANE), an extremely rare and devastating brain condition caused by the flu. Alongside the neurological damage, she also developed severe abdominal complications. A leak formed in her intestine, requiring emergency surgery in which surgeons had to remove around 60% of her bowel to save her life. She later needed a second operation after air began to collect in her abdomen.

Sienna’s father, Gary Dunion, reflected on the moment his family’s world turned upside down, saying it came as a complete shock. “Sienna was a healthy, active four‑year‑old, so it all happened incredibly quickly,” he said.

''She had no kind of symptoms at all. She had a bit of a sniffly nose a few days before, but nothing to cause concern.''

Doctors warned the family early on that if Sienna regained consciousness – something they said was not guaranteed – she would not be the same child they knew before. They explained that the road ahead would be extremely long, and that Sienna might never walk, talk or eat independently again, urging her parents to prepare for that possibility.

Despite those devastating predictions, Sienna has recently begun to make remarkable progress in her recovery since leaving hospital.

"We've had her home for 2 weeks today, which is absolutely unbelievable. She's started taking her first unsupported steps, eating us out of house and home, and she recalls everything from holidays and school." Gary said.

Gary explained that there is still a big journey ahead, particularly when it comes to Sienna’s speech, balance and overall coordination. The family are now preparing for intensive rehabilitation and will be travelling to a specialist clinic in the coming weeks to begin the next stage of her recovery.

The limited global understanding of ANE has prompted Gary to focus on advocacy for more comprehensive clinical studies and trials, both to identify potential causes and to establish standardised treatments. "I think what I would really like to happen is to see some global clinical trials put together in terms of what causes ANE.'' He said.

Gary is working alongside various charities, including The Eden Dora Trust and families facing similar challenges. He highlighted the need for improved education around acquired brain injuries in schools and greater support for affected families, saying, "We're looking at how we work with schools, and we're trying to lobby to get that into the school education system."

“It cannot just be treated as another generic learning need.”

He explained that many teachers are still unfamiliar with how an acquired brain injury affects behaviour, emotions and learning. He explained: “It is about helping schools understand why children might behave differently, or struggle with things like fatigue or concentration.”

''As parents we want to ensure any long‑term effects of ANE, such as tiredness or reduced focus, are fully understood by school staff who will be working with her each day.''

Gary said one of the most reassuring things has been seeing is that Sienna’s bright, funny character is still shining through. He said, ''Her personality and humour seems to be fully intact.''

Watching Sienna and her big sister Adriana back together, laughing and winding each other up just like they used to, is something the family feared they might never witness again. Gary said that, after everything they have been through, the level of recovery Sienna is showing is “beyond our wildest dreams.”

“She’s still joking around and playing tricks on me, which is amazing.”

He shared that the response from the local and wider community, including messages of support, donations and fundraising efforts, has been greatly appreciated. “Our world turned upside down very quickly, and I’d say the one thing we’ve been truly grateful for is the support from friends, family and the wider community.”

As Gary continues working to raise awareness of his daughter’s condition, he stressed how vital it is for research and understanding to improve, so that other parents can be better prepared if the worst were ever to happen.

To read more about Sienna's journey visit www.gofundme.com

• northamptonshire
• child illness