A mother who made legal history by winning the legal right to end the life of her severely disabled 12-year-old daughter has described how she was forced to make her heartbreaking decision, and has vowed to fight for other families in her position.
Charlotte Fitzmaurice's daughter Nancy was born blind and suffering from hydrocephalus, meningitis and septicemia. She was unable to walk, talk, eat or drink and relied on round-the-clock care from London's Great Ormond Street Hospital.
Towards the end of her life, she was no longer able to be fed as she had intestinal failure, but despite this legally she was to be kept alive and fed through tubes, a process which caused the 12-year-old to scream and contort with pain, despite the vast amount of drugs she was on.
Appearing on ITV's This Morning, Charlotte said she knew her daughter would let her know when she had "had enough" and when her pain medication could no longer be managed she knew it was time.
She said she regrets having to go to the High Court herself and feels the decision should have been taken away from her, when it was "clear" her child was an in excruciating pain that could not be legally managed, without turning into a kind of euthanasia.
Charlotte, who gave up work to look after her daughter, said the judges comments commending her efforts didn't mean anything to her, as she was bereft without her child, who was her whole life.
She said the last day of her daughter's life was the hardest day of hers, as Nancy settled out of pain, but slipped into a coma and then passed. She said she is completely lost without her child, but has some element of peace knowing she is no longer in pain.