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Sarah had a rare brain disorder. Her mother Ella had been told that she probably would not live past the age of 2, that she would have bad seizures and chest infections and that she would be severely disabled.
When Sarah was admitted to hospital Ella found discussions about life support "confronting" and told her specialist that they were "not ready to have that conversation yet".
But Sarah's condition worsened, with seizures coming more frequently.
Ella and her husband found this difficult to accept. Looking back at that time
Finally they decided not to use antibiotics when Sarah had another infection
Sarah died in her mother's arms at home, with her father and her siblings also present, and a nurse there to support the family.