A mother from London has described how her world felt like it was ending when her three-year-old son was diagnosed with a rare autoimmune disease that attacked his brain, leaving him unresponsive and making her feel as though he was no longer present.
Initial Symptoms and Diagnosis
Sebrina Limrick first noticed changes in her usually energetic and bubbly son, Amari, in May 2022. He began sleeping excessively, withdrew from his favorite activities, and one night woke up staring blankly at a corner while babbling incoherently. Concerned, Sebrina called 111 and took him to the hospital on May 10, where she insisted something was wrong with his brain.
Doctors initially dismissed his symptoms as an infection, but after Amari started vomiting hours later, Sebrina demanded further investigation. She showed doctors videos comparing his usual behavior to his current state. A doctor on call suspected encephalitis, an inflammation of the brain caused by the immune system attacking it in error.
While awaiting a spinal tap to confirm the diagnosis, Amari began drooling and having seizures. Sebrina kept talking and singing to him, feeling as though he was not there. His father, Collin, was stranded in Antigua waiting for a visa, adding to the stress.
Intensive Care and Treatment
On May 15, Amari was placed in an induced coma and transferred to The Royal London Hospital, where an MRI confirmed anti-NMDA receptor encephalitis. This autoimmune condition causes altered mental state, behavioral changes, seizures, abnormal movements, hallucinations, sleep disturbances, and decreased consciousness.
When Amari woke from the coma, doctors informed Sebrina he would need to relearn how to walk and talk. Treatment began with rituximab in intensive care, where he was monitored around the clock. Initially, progress seemed positive, but suddenly his liver and kidneys began failing, requiring two weeks of dialysis. Despite the pain, Amari remained resilient, often smiling or giving a thumbs-up.
Long-Term Hospitalization
Amari was transferred to Great Ormond Street Hospital (GOSH) on August 10, 2022, just before his fourth birthday, where he remained as an inpatient for two years. During this time, he underwent multiple surgeries, treatments, and rehabilitation sessions. Sebrina became deeply involved in his care, learning to perform observations, change dressings, and manage his needs.
Doctors discovered strictures in his stomach, requiring strong pain medication and a pump connected 24/7, which limited his ability to go outside. In April 2023, 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.
Support from Spread a Smile Charity
Throughout this challenging period, the charity Spread a Smile provided crucial emotional support. They offered in-person and virtual entertainment, including magicians, musicians, and therapy dogs, for seriously ill children and their families in NHS hospitals. Sebrina described them as "angels" who brought joy even on the hardest days.
Amari and Sebrina first encountered Spread a Smile in December 2022, after four months in hospital. Although infection control often prevented entertainers from entering his room, they would wave from the window. The charity also sent personalized birthday videos and Christmas gift boxes, and organized summer parties with music and magic.
Recovery and Discharge
Amari was discharged on July 1, 2024, with Spread a Smile organizing a send-off party featuring magic, a fairy, singing, balloons, and bubbles. Now seven years old, he attends school full-time and has returned to his bubbly, energetic self. He no longer requires a feeding tube or line, and his appetite has returned fully.
Sebrina expressed immense gratitude for the charity's support, stating, "We still attend all the Spread a Smile parties and are so grateful for everything they have done for us."
