A toddler from Lancashire is recovering from acute necrotizing encephalopathy (ANE), a rare and severe brain condition triggered by an asymptomatic Covid infection that gave her only a 50/50 chance of survival. Lettie, who was 17 months old when she fell ill, experienced rapid neurological decline that left her body rigid and caused significant brain damage, according to her parents Jack and Zuzanna.
The frightening ordeal began when Lettie refused breakfast one morning but otherwise appeared normal. Within an hour, she vomited, turned pale, and her breathing became laboured before collapsing in her father’s arms. An ambulance rushed her to hospital where doctors initially suspected a febrile seizure, but her parents insisted on further testing when her skin became purple and mottled.
Understanding Acute Necrotizing Encephalopathy
Medical tests revealed that Lettie had asymptomatic Covid which was triggering acute necrotizing encephalopathy. The condition is extremely rare and causes rapid neurological decline when the immune system overreacts to viral infections such as flu or Covid. Jack, a 23-year-old Asda employee, explained that it was not the virus itself but Lettie’s autoimmune system turning on itself that caused the devastating damage.
Four days after admission, doctors diagnosed ANE and explained that Lettie’s brain stem, basal ganglia and cerebellum had sustained damage. Her parents were told the next five days would be crucial in determining whether she would survive. Additionally, medical staff could offer little certainty about her long-term prognosis, telling the family that only time would tell how her recovery would unfold.
Life-Threatening Symptoms and Hospital Treatment
Jack described the terrifying moment when Lettie went stiff, saying her little body “turned to stone” while she remained awake and crying. The toddler was placed on a ventilator and prescribed numerous medications including steroids. She remained hospitalized for more than 100 days before being discharged in November 2025 to receive at-home care.
The brain damage from acute necrotizing encephalopathy affected Lettie’s movement, muscle control, ability to communicate and eat. Once stable, she began physiotherapy, occupational therapy, and speech and language therapies to regain lost functions. However, the extent of recovery from such severe neurological damage remains uncertain, doctors indicated.
Current Recovery and Small Victories
Currently, the toddler remains bedbound and requires a specialist mobility buggy to get around. She is unable to move independently, though her parents have observed small signs of progress including being able to hold objects with one hand and occasionally lifting her head. Meanwhile, Jack and Zuzanna have been overjoyed to see Lettie become more vocal, babbling and giggling at times and even saying ‘mama’ and ‘dada’.
Jack, now 23, and Zuzanna, 20, described the emotional challenges of watching their previously independent daughter struggle with basic functions. Jack said Lettie gets frustrated often, crying when she tries to speak but nothing comes out. The parents acknowledged that some days are harder than others as they watch other children grow up and live full lives.
Raising Awareness of ANE
The couple had never heard of acute necrotizing encephalopathy before Lettie’s diagnosis and are now committed to spreading awareness of the condition. They emphasize how dangerous and sudden ANE can be and how quickly it can change or even take a life. The family’s goal is to help other parents recognize the warning signs of this rare but devastating condition triggered by common viral infections.
Despite the uncertainty surrounding Lettie’s future, her parents remain optimistic and celebrate small victories. Jack said they try to take every day as it comes with no expectations, simply appreciating the progress their daughter makes. The family continues with intensive therapy sessions while monitoring Lettie’s development, though doctors have not provided a definitive timeline for her recovery.
