Luke Winston-Jones, aged nine months, was given only days to live when he was diagnosed shortly after birth with the devastating genetic disorder Edwards syndrome.

Last month medical staff caring for Luke were granted permission to withhold life-saving treatment by "aggressive" mechanical ventilation if his condition deteriorated. The ruling was made by Dame Elizabeth Butler-Sloss, president of the High Court’s Family Division.

A relative of the Winston-Jones family said: "Luke passed away at Alder Hey Children’s Hospital in Liverpool at 3am this morning with his mother and family members at his bedside."

But the manner of Luke's death has already renewed the controversy that surrounded his life. Luke’s aunt, Jacqui Kirkwood, demanded an inquiry into his treatment by doctors in his final hours. She claimed he did not receive the life-saving treatment which the court had ordered must be carried out.

She said: "The whole family is grieving but we are also angry as well because of the actions of the medical staff. This is exactly what we did not want to happen.

"Ruth had left Luke at 12.20 last night and he was fine. She was called back an hour later after he developed a slight temperature."

Mrs Kirkwood said doctors refused to carry out procedures that would have saved Luke’s life and he passed away. She added: "We want a full inquiry into what happened, we will not let this rest."

This morning Luke’s mother Ruth said she was "severely traumatised" by the events. She said: "It is the end of my world, I have lost my precious little boy."

Despite the severity of his medical condition, baby Luke, whose family live in North Wales, defied medical predictions and in his short life was able to recognise his mother, enjoy music and the company of his siblings.

Luke, who also suffered from heart and breathing problems, never left hospital. His mother, Ruth Winston-Jones, 35, said that nonethless he was a "real person with personality" who responded to her.

She had fought against an application by Royal Liverpool Children’s NHS Trust and North West Wales NHS that Luke should not receive treatment and said that leaving it to doctors "would constitute an abrogation of her maternal duty".

The case came to the High Court only two weeks after a judge ruled that another seriously ill baby, Charlotte Wyatt, should not be given aggressive treatment but should be allowed to die peacefully.

Sufferers with Edwards syndrome, which is also known as Trisomy 18, usually have an average life span of under two months with less than 10 per cent surviving more than a year.

Babies with the syndrome appear thin and frail, they fail to grow properly and have difficulty feeding.

An appeal fund, supported by the Duchess of York, was set up to fund Luke’s care shortly after his birth.

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