A toddler who had no symptoms has been diagnosed with a terrifying disease which attacks her brain – with her parents forced to watch her body “turn to stone”.
Lettie is just 22-months-old but has been facing a health battle that would horrify most grown adults.
The day their life changed started like any other for the family-of-three, but when the tot refused breakfast, it was the first sign that something was amiss – with her parents, Jack and Zuzanna [surname not shared for privacy reasons], noting that she was otherwise completely herself.
But the morning descended into terror within just an hour of waking up when the tot vomited, turned pale, and her breathing became laboured – before she collapsed in 23-year-old Jack’s arms.
An ambulance rushed Lettie to hospital, where doctors initially thought she had suffered a febrile seizure, but her parents were alarmed when her skin became purple and mottled, and insisted on further testing.
There, they learned she had asymptomatic Covid which was triggering acute necrotizing encephalopathy (ANE) – a rare, and severe, brain condition triggered by viral infections, like flu, which causes rapid neurological decline.
Her parents were told that Lettie, who was 17-months-old at the time, had a 50/50 chance of survival over the days that followed.
“Just hours before Lettie completely declined, Zuzanna turned to me and said ‘Something is really wrong, I just have this feeling we’re going to lose her’,” Jack, an Asda employee from Fleetwood, Lancashire, told Need To Know.
“It’s crazy how powerful a mother’s intuition is because, not long after that, Lettie went stiff.
“The best way to describe it is that her little body turned to stone – she was awake and crying but frozen.”
Jack and Zuzanna, 20, were told Lettie had Covid, despite showing no symptoms, and she went on to have several tests and scans, as well as an emergency lumbar puncture.
Four days after she was admitted, doctors diagnosed her with ANE, and explained to her parents that her brain stem, basal ganglia and cerebellum had been damaged as a result.
Jack said: “It wasn’t Covid itself that caused the damage, but her autoimmune system overreacting and turning on itself.
“We had absolutely no idea she had Covid – the day prior she had been absolutely fine, and even said ‘I love you’ for the first time.
“Until Lettie was diagnosed, we had never once heard of ANE either.
“The doctors explained that it is extremely rare and she had about a 50% chance of survival.
“The next five days were crucial, as in those days she could go either way.
“We were absolutely terrified.
“We couldn’t imagine a world without Lettie in it.
“No doctor could tell us what would happen or how her life would look – we were met with a lot of ‘only time will tell’ – which though understandable, is very frustrating.
“We just wanted our little girl back.”
Lettie was placed on a ventilator and prescribed numerous medications, including steroids.
She remained in hospital for more than 100 days, and was discharged in November 2025 to have at-home care.
Once she was stable, she began physiotherapy, occupational, and speech and language therapies to regain some of the functions she lost due to the brain damage, which affected her movement, muscle control, ability to communicate and eat.
Currently, the toddler is unable to move independently, though is showing small signs of progress, including being able to hold objects with one hand and occasionally lifting her head.
For now, she remains bed bound and requires a specialist mobility buggy to get around.
Recently, her parents have been overjoyed to see her become more vocal, babbling and giggling at times and even being able to say ‘mama’ and ‘dada’.
While the future is unknown, her parents remain optimistic.
Jack said: “We try to take every day as it comes – no expectations, just simply celebrating the little wins.
“Some days are harder than others.
“It’s heartbreaking seeing such a smart, independent little girl become so dependent.
“She gets really frustrated often crying when she tries to speak but nothing comes out.
“Some days it really hurts watching other children grow up and live a full life because we know she deserves that as well, and it feels like although she’s alive, her life has been cut short.
“But she shows us daily that she is a little fighter and we believe she can achieve a lot.
“Our goal now is to spread awareness of ANE – and how dangerous and sudden it is, how quickly it can change or even take a life.”
