Girl left in coma after getting brain bug after catching the flu

By Adam Dutton and Kate Cronin

A four-year-old girl was left fighting for her life in a coma after suffering from a rare "one-in-a-million" brain condition - caused by the flu.

Little Sienna Dunion was rushed to hospital after her parents found her unresponsive just days after she was given Lapland UK tickets as a Christmas treat.

Dad Gary, 41, said the youngster had a mild temperature and common flu symptoms but was playing normally in the hours before she collapsed on November 19.

Doctors at Kettering General Hospital placed her in an induced coma before she was taken to intensive care at Nottingham's Queens Medical Centre.

She was diagnosed with Acute Necrotizing Encephalopathy, a rare but serious condition that causes brain damage following a viral infection mostly triggered by the flu.

She has now woken from her coma but remains in a serious condition in hospital where she is expected to remain for months and her future prognosis remains unclear.

Dad-of-two Gary, of Corby, Northants., said: “She’d been poorly but not extensively. She’d had a slight temperature but had been fine in herself.

"She’d been playing around and we thought she’d be back in school on Tuesday.

“But when she didn’t wake up, we rushed her in to hospital and that’s when it turned pretty quickly.

"Sienna was in an induced coma until Monday evening, she’s been breathing on her own. She was in an induced coma for three weeks.

“People with this rare illness, 40 or 50 percent don’t make it out of the coma, so the fact she has is incredible.

“I’ve been doing a lot of reading and case studies locally on this. ANE creates an overactive immune system, it can’t react to it quick enough.

"The trigger is typically the flu, the cause is not the flu, it just triggers the response.

“There’s a lot of information and activity on the brain. It’s a very rare disease, it’s like one in a million chance of getting it."

Sienna also developed a leak in her intestine and had to undergo emergency surgery, where surgeons had to remove 60 percent of her intestines to save her life.

She then required a second operation due to air collecting in her abdomen.

Gary and wife Angelina, 38, is now trying to raise awareness of ANE so other parents can spot the warning signs.

Gary, who runs a recruitment firm, added: "It’s very under-reported.

"The lack of understanding of what triggered it is remarkable, it’s a case of it can happen to everyone, whether vaccinated or not.

“You’re looking at hundreds of people worldwide, not millions. We don’t know the cause; nobody knows. There’s no set standard treatment roadmap.

More from this section

Large Review Finds Limited Proof Behind Many Medical Cannabis Uses

Doing Nothing Appears Best Approach To Common Heart Defect Among Preemies

How to Head Off Tendon Trouble

"The road ahead is incredibly challenging, and we may never get our old Sienna back.

"Due to the damage ANE has caused to her brain, when Sienna eventually wakes, she will be unable to walk, talk, or eat, and will require a huge level of neurological care.

" She will need intensive physiotherapy, occupational therapy, speech and language therapy, feeding support, and specialist rehabilitation for many months — possibly years."

ANE primarily affects children, causing inflammation and swelling in the brain, which can lead to severe neurological symptoms and long-term damage, mainly impacting movement and speech, according to Boston Children's Hospital in the US.

Gary added: “The prognosis is just so diverse.

"The survivors, half are permanently disabled and half have some form of brain damage.

"And 40 per cent don’t make it out of ICU - it’s all been a bit much, but I’m hell bent on raising awareness. It’s very misunderstood even the senior doctors didn’t have a clue.

“It’s an hour by hour thing. ANE is to damaged lesions in the center part of the brain. The part of the brain that has been damaged affects movement, speaking, eating and walking.

"In terms of her recovery it’s completely up in the air and what damage it’s caused.”

Now her parents are raising £100,000 to fund rehabilitation and modifications for their home when Sienna is discharged while trying to juggle caring for her seven-year-old sister Adriana.

The youngster may need feeding support and nutritional care, including special equipment and monitoring.

She will also need specialist neurological rehabilitation to help her regain movement, coordination, and basic functions.

Gary said: “Her baseline at the moment isn’t a lot, she can open her eyes and flicker them. It’s going to be months of intense daily neurological rehab to get her back to some form of normality.

“At the moment it’s just a case of making sure she can stabilize and then we can intensify the rehab. It’s a waiting game, and that’s the thing. It’s so diverse so you can’t make a guess.

“We’re waiting for some positives to happen every day, we’ve spent the past three weeks in a holding pattern. It’s frustrating. All the nurses, surgeons, the neurology team have been absolutely unbelievable.

“We are determined to do everything possible to give Sienna the best chance at recovery, but the costs are beyond what we can manage on our own.

"Every donation, no matter how small, will make a huge difference in helping Sienna get the care, therapy, and support she urgently needs.

“We now face the stark reality that we're going to be in hospital for months rather than weeks while Sienna receives round the clock care.

"We will need to split our time between hospital and home, caring for her big sister Adriana while being by Sienna’s side as much as possible.

“We thank you from the bottom of our hearts for your kindness, generosity, and support during this unimaginably difficult time.

"Your support will help give Sienna the best chance at recovery and hope for the future.”