They must have been the hardest words any mother could ever have to imagine about her child.
But devoted Charlotte Fitzmaurice bravely wrote them down and handed them to a High Court judge to win for 12-year-old daughter Nancy what she believed she needed most.
To put an end to her suffering – and finally to be at peace.
Nancy was born blind with hydrocephalus, meningitis and septicaemia. It meant she could not walk, talk, eat or drink.
Her quality of life was so poor she needed 24-hour hospital care and was fed, watered and medicated by tube.
As her health deteriorated, she spent hours screaming in agony despite the morphine and ketamine she was given.
For Charlotte too, the pain of seeing her daughter suffering like this was too much to bear.
After 12 heartbreaking years, she went to court to fight for Nancy’s right to die.
Her moving 324-word statement was read out by Justice Eleanor King in August.
Giving the reasons why Nancy should be allowed to die, Charlotte said: “My daughter is no longer my daughter, she is now merely just a shell.
“The light from her eyes is now gone and is replaced with fear and a longing to be at peace.”
“Today I am appealing to you for Nancy as I truly believe she has endured enough. For me to say that breaks my heart. But I have to say it.”
In a landmark decision, Justice King immediately granted Charlotte’s request.
Nancy died 14 days later at London’s Great Ormond Street with her family around her after fluids were withdrawn.
The ruling sets a precedent. It is the first time a child breathing on her own, not on life support and not suffering a terminal illness has been allowed to die.
The judge’s decision was fully supported by doctors at the world famous children’s hospital – but it is bound to reignite the “right to die” debate.
And it will be further fuelled by what Nancy’s parents’ have to say today.
Charlotte, 36, had the support of Nancy’s dad, company boss David Wise, 47.
And the pair agreed to share details of Nancy’s case because they believe parents facing the same life-or-death decision should be able to make it without going to court.
They think parents should decide with medics at hospital rather then pleading in front of a judge.
It is a controversial stance. Nancy’s case comes five years after the High Court approved the death of baby Ronnie Bickell. He was born with a genetic condition that rendered his muscles useless.
Ronnie was on a ventilator and could not communicate but could hear, feel and see.
After months of round-the-clock care the hospital applied to turn off his life support, leaving his mum and dad on opposite sides of a bitter court battle.
In November 2009 a High Court judge ruled with his mother Kelly that Ronnie’s quality of life would not be good enough to justify the medical care. Ronnie was 13 months old when his life support machine was switched off.
A year later Hannah Jones made headlines in a High Court story that took a remarkable twist – and bolstered the case against the right to die.
At 13, she refused a life-saving heart operation. Herefordshire Primary Care Trust applied to the High Court to force the op but dropped the case after she convinced them she did not want surgery.
The next year Hannah, of Marden, decided to have the operation. The transplant was successful and she made a full recovery.
Charlotte, 36, never had such hopes of a happy ending for Nancy. She was told her baby was likely to be born severely ill two days before she gave birth in July 2002.
Charlotte was carrying Group B Streptococcus. It had gone untreated during her pregnancy.
She says: “Hearing my little girl’s condition could have been treatable in the womb was unbearable. If caught early, simple antibiotics can treat it.
“Instead Nancy was born blind with meningitis and septicaemia. It was utterly devastating. But I knew I would love her no matter what.”
At 10 days old, Nancy had to have a shunt fitted in her brain. She spent a month in hospital but was finally allowed to go home. Doctors warned she was likely to die before her fourth birthday.
Charlotte says: “When she was just six months old she was diagnosed with epilepsy and was having daily seizures.
“It was heartbreaking to watch her in so much pain.”
Charlotte became Nancy’s full-time carer and gave up her job as a nurse. She would medicate and feed her daughter through a tube.
As well as the conditions she was born with, Nancy was later diagnosed with brain disorder lissencephaly and microcephaly, a rare neurological disorder.
Charlotte says: “We were constantly in and out of hospital. She never developed more than a six-month-old child.
“Simple things like birds singing and hearing children play would put the most beautiful smile on her face. She loved Michael Buble and when I slurped my tea she would give out a hearty chuckle.
“I gave her the best quality of life she could possibly have.”
Nancy battled on well past her fourth birthday.
But an operation in May 2012 to remove kidney stones left her with an infection and specialists said there was nothing more they could do.
Because Nancy had spent her short life in pain she became immune to even a cocktail of morphine and ketamine.
Charlotte says: “She was screaming and writhing in agony 24 hours a day. Not being able to ease her suffering was too much to bear.
“She wasn’t my angelic child any more, she was a shell. I wanted beautiful memories of Nancy, not soul-crushing ones.
“After a whole weekend of her screaming in agony, I decided I wasn’t going to watch my little girl suffer any more.”
Charlotte and David met the ethics board at Great Ormond Street Hospital to beg them to put an end to Nancy’s suffering.
While doctors agreed to stop feeding her, they could not withdraw all fluids and said without food it could take months for her to die.
Charlotte says: “There was no way I was going to let her stay in extreme pain for months.
“It killed me there was nothing I could do to help her. All the nurses were in tears as they saw her screaming.
“All I wanted was for my daughter to die with dignity with me holding her hand.”
The hospital agreed to take Nancy’s case to the High Court of Justice on her behalf – to argue she deserved the right to a quicker, more painless death.
On August 7, while Charlotte waited by Nancy’s side, Justice King granted that right.
She said: “The love, devotion and competence of Nancy’s mother are apparent.
“In her own closed world she has had some quality of life. Sadly that is not the case now.
“Please can you tell Nancy’s mother I have great admiration for her.”
Charlotte says: “As devastating as it was to know my child was going to die, it was also a relief. I just wanted her to be at peace.”
On August 21, Nancy died. Charlotte says: “The last day was the hardest of my life. I miss my beautiful girl every day and although I know it was the right thing to do, I will never forgive myself.
“It shouldn’t have to be a mother’s decision to end a child’s life, I believe hospitals and parents should be able to decide without mothers or fathers going to court.
“I want parents to know it’s OK to want your child to be at peace, it doesn’t mean you love them any less.”
Charlotte still experiences pangs of guilt over Nancy’s drawn out death.
“Watching my daughter suffer for days while they cut off her fluids was unbearable. She went in pain. It will stay with me forever.”
Nancy’s father David added: “It was heartbreaking to see my daughter like that. It was the hardest decision we ever made.”
In the midst of grief, Charlotte and David – who had been separated – have rekindled their relationship.
Now they are setting up The Nancy Wise Fund to help parents fund funerals for their children.
“Although I will live with the guilt forever,” says Charlotte, of Ilford, Essex. “I know I have done everything I can for her and she is at peace.”
A spokesman for Great Ormond Street said: “In all cases we try to support families and help them come to an informed decision in the best interests of their child.
“In Nancy’s case, her mother and extended family provided her with an exceptionally high quality of care, and acted with remarkable grace and dignity in arriving at very difficult decisions.”
