Toddler's Body 'Turned to Stone' After Common Virus Triggered Rare Brain Condition
A healthy toddler was given just a 50/50 chance of survival when doctors discovered that a common viral infection had triggered a rare and devastating brain condition. The case highlights the unpredictable nature of certain medical emergencies that can strike without warning.
A Normal Morning Turns to Horror
It began like any ordinary day for Lettie's family in Fleetwood, Lancashire. When the 22-month-old refused breakfast, her parents Jack, 23, and Zuzanna, 20, initially thought little of it. The toddler otherwise seemed completely herself, showing no obvious signs of distress or illness.
Within just one hour of waking up, the situation deteriorated dramatically. Lettie vomited, turned pale, and began breathing laboriously before collapsing in her father's arms. The young parents watched in horror as their daughter's body stiffened, with Jack describing it as "turning to stone" while she remained conscious and crying.
Emergency Hospitalization and Diagnosis
Rushed to hospital by ambulance, Lettie was initially thought to have suffered a febrile seizure. However, when her skin turned purple and mottled, her terrified parents insisted on further investigation. After extensive testing including scans and an emergency lumbar puncture, doctors delivered the devastating diagnosis four days later.
Lettie had asymptomatic Covid-19 which had triggered acute necrotizing encephalopathy (ANE) – an exceptionally rare and severe brain condition typically sparked by viral infections like influenza. This condition causes rapid neurological decline as the immune system overreacts and attacks the brain.
"It wasn't Covid itself that caused the damage, but her autoimmune system overreacting and turning on itself," explained Jack, an Asda employee. "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."
Critical Days and Long Recovery
Doctors revealed that Lettie's brain stem, basal ganglia and cerebellum had been damaged, and she faced a 50% chance of survival in the coming critical days. The toddler was placed on a ventilator and prescribed numerous medications including steroids, remaining hospitalized for over 100 days before being discharged in November 2025 for at-home care.
Zuzanna's intuition proved tragically accurate when she told Jack just hours before Lettie's complete decline: "Something is really wrong, I just have this feeling we're going to lose her." The parents describe the uncertainty as particularly difficult, with doctors unable to predict outcomes beyond "only time will tell."
Progress and Ongoing Challenges
Since returning home, Lettie has begun intensive rehabilitation including:
- Physiotherapy to regain movement
- Occupational therapy for daily functioning
- Speech and language therapy to recover communication abilities
The brain damage has affected her movement, muscle control, ability to communicate, and eating. Currently unable to move independently, she remains bed-bound and requires a specialist mobility buggy. However, she has shown remarkable progress including:
- Holding objects with one hand
- Occasionally lifting her head
- Becoming more vocal with babbling and giggling
- Saying "mama" and "dada" again
Family's Resilience and Awareness Mission
Jack and Zuzanna cherish every milestone while acknowledging the emotional challenges. "It's heartbreaking seeing such a smart, independent little girl become so dependent," Jack shared. "She gets really frustrated often crying when she tries to speak but nothing comes out."
The family now focuses on spreading awareness about ANE's dangers. "Our goal is to spread awareness of ANE – and how dangerous and sudden it is, how quickly it can change or even take a life," Jack emphasized. They remain optimistic despite the uncertain future, celebrating small victories while advocating for greater understanding of this rare condition that transformed their lives in moments.
