It started like any other normal day for Lettie's family - but when the tot refused breakfast, it was the first sign that something was wrong.

The youngster's parents, Jack, 23, and Zuzanna, 20, said that other than a lack of appetite, the 22-month-old seemed completely herself. They had no idea that her brain was being attacked by a terrifying disease.

The morning turned into horror within just an hour of waking up when Lettie was vomited, turned pale, and her breathing became laboured. Suddenly, she collapsed in 23-year-old Jack's arms. In a matter of moments, the young parents were forced to watch their baby's body "turn to stone".

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The tot was rushed to hospital in an ambulance and at first, doctors believed she had suffered a ferbile seizure. But her mum and dad became even more terrified when Lettie's skin started turning purple and mottled, and insisted on more tests.

Finally, the family-of-three got answers. Little Lettie had asymptomatic Covid which was triggering acute necrotizing encephalopathy (ANE) – a rare, and severe, brain condition sparked by viral infections, like flu, which causes rapid neurological decline.

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Devastatingly, Jack and Zuzanna were told that Lettie, who was 17-months-old at the time, had a 50/50 chance of survival in the coming days.

"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, explained.

"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."

Lettie, who had showed no Covid symptoms, went on to have several tests and scans, as well as an emergency lumbar puncture. Four days after she was admitted to hospital, doctors diagnosed her with ANE, and told 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."

The poorly tot 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, Lettie started 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.

At the moment, the toddler is unable to move independently, though is showing small signs of incredible 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.

Jack and Zuzanna are cherishing the progress milestones and 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, they are staying optimistic. "We try to take every day as it comes - no expectations, just simply celebrating the little wins, Jack said. "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."