The brave youngster, who loved every minute of her short life, died on 12 May in her mother Simone’s arms at Sunderland Royal Hospital after she was no longer able to fight a series of infections. Her grandmother, Susan Clark, tells her story here.
“Lillia was born early after her mam’s waters had drained slowly over weeks. She was sent home the next day but was very sleepy, making grunting noises and not feeding well. Our midwife reassured us that she was fine. But when she was four days old she stopped breathing in my daughter’s arms. My husband gave her CPR while we waited for the ambulance.
“She arrived at hospital and her heart stopped beating. Doctors worked on her and thankfully brought her back. She was taken to neo-natal intensive care and we were told it was an infection and they were doing a lumbar puncture, but the next 24 hours would be critical.
“Lillia kept fighting but just as she was improving we noticed that her head seemed to be getting bigger. Doctors told us it was fluid and drained it. Within an hour it was bigger than before it was drained and she was rushed for emergency surgery to have a shunt fitted.
“By the age of 4 she had had alot of surgeries. She had cerebral palsy, hypotonia, diabetes, hydrocephalus, was partially sighted and partially deaf. She was tube fed and epileptic. Lillia fought every day of her life though – she was beautiful and smiled all the time.
“Meningitis and Strep B need to be better publicised - people don't realise there doesn't have to be a rash.
Lillia’s parents Josh Merrington and Simone, told the local Sunderland Echo newspaper “Lillia loved every minute of her life and always kept our spirits up by laughing and smiling.
“We wouldn’t have done anything different. All we would have wanted to change would be to give her better health, but we’ve loved every second of her life and we just feel blessed for the time that we had with her. Now she’s at peace and as her sister Talia says, she’s playing with the angels in heaven.”