A mother has shared how she felt her "world was over" after her three-year-old son was diagnosed with a rare autoimmune condition that attacked his brain, leaving him unresponsive and giving her the distressing feeling that "he wasn't there."
Initial Symptoms Dismissed
Sebrina Limrick first noticed changes in her lively son Amari in May 2022. The once-active boy began sleeping excessively and lost interest in his favourite activities. After a night where Amari stared blankly and babbled incoherently, Sebrina called 111 and took him to hospital on May 10. Despite her concerns, doctors initially sent them home, attributing the symptoms to an infection. However, when Amari began vomiting hours later, Sebrina pushed for further investigation.
"I was getting incredibly frustrated," said Sebrina, 35. "When we were finally seen, I showed the doctor videos of what he was usually like compared to what he was doing. Fortunately, a doctor on call that night suspected encephalitis."
Diagnosis and Coma
While awaiting a spinal examination, Amari began drooling and suffering seizures. On May 15, he was placed into an induced coma and transferred to The Royal London Hospital, where an MRI confirmed anti-NMDA receptor encephalitis—a rare form of autoimmune encephalitis that causes altered mental state, behavioural changes, seizures, and reduced consciousness. His father Collin, stranded in Antigua awaiting a visa, managed to reach the UK just in time.
After emerging from the coma, doctors informed Sebrina that Amari would need to relearn how to walk and talk. His recovery was complicated by liver and kidney failure, requiring two weeks of dialysis. "He was so strong and resilient," Sebrina recalled. "I would be breaking down, and he would be in agony but still have a big smile or give a thumbs up."
Long Hospital Stay
Amari was transferred to Great Ormond Street Hospital (GOSH) on August 10, 2022, where he remained for two years. He underwent numerous surgeries, treatments, and rehabilitation sessions. In April 2023, doctors said the only remaining option was a bone marrow transplant. The family requested to celebrate his fifth birthday first, and the transplant took place on October 5 and 6.
Throughout the ordeal, Sebrina became deeply involved in her son's care. "I learned how to do observations, change his dressing, and do lots of things to make it easier for Amari when he was struggling," she said.
Support from Charity
The charity Spread a Smile provided crucial support, offering face-to-face and online entertainment including magicians, musicians, and therapy dogs. "Spread a Smile were angels we didn't know we needed," Sebrina said. "On the lowest days, they would put a smile on your child's face, even if just for five minutes." The entertainers would wave to Amari from his window when he was under infection control.
Recovery and Discharge
Amari was discharged on July 1, 2024, with a party organised by the ward and Spread a Smile. Now seven years old, he attends school full-time and has returned to his bubbly, energetic self. "He no longer has a line, no longer has a gastrostomy, and has gone from not wanting to eat to eating everything in the house," Sebrina said. The family continues to attend Spread a Smile events, grateful for the charity's support.
