Baby RB, whose parents fought a legal battle with each other over whether to keep him alive, has died after his life support was removed.

Last week the child’s father withdrew a High Court challenge to keep the disabled 13-month-old alive against the wishes of the mother.

At 1pm on Friday, Baby RB’s breathing tube was removed and he died shortly afterwards, with his parents at his side.

The identity of the child and parents is protected by a court order, but last night his mother spoke out about the pain of her son’s life and death. “When they took his tube out, I was cuddling him,” she told a newspaper. “It was so amazing to see him without it — it’s the longest we had seen his face properly. It made him look so peaceful, he was so beautiful.

“I kept on kissing him. The last thing I said to him was that I loved him and would always be there for him.

“Anyone who judges me doesn’t know how hard it was. We could have withdrawn care at four weeks old but we didn’t — we fought for him. I’ve loved every second, every minute I’ve had with my son and in my eyes he’s still my perfect little boy.”

Baby RB was born in October last year with congenital myasthenic syndrome, a rare disorder, which left him incapable of breathing or moving.

On the advice of doctors his mother had requested that his life support be removed, allowing him to die naturally.

However, his father launched a legal bid to keep their only child alive. On the seventh day of trial at the Royal Courts of Justice last Tuesday he decided, as a result of overwhelming medical evidence, not to pursue the case.

Baby RB’s mother, who is amicably separated from the father, praised his decision. She told The Mail on Sunday: “He had finally realised how poorly our son was. When I saw [him] crying in court, I could tell he was so devastated and upset.

“The reality had hit home. It had taken him 13 months to realise it. I told [him] I really respected and loved him for what he was doing for our son and for me.”

The couple decided to turn off Baby RB’s life support after giving his extended family a chance to say goodbye.

His mother said: “When I came back from London on Tuesday and saw him, I just burst into tears. It was hard seeing him and knowing what was going to happen. But I’ve got no regrets.”

On Friday morning they dressed Baby RB in his green Ted Baker Babygro and carried him gently from his hospital bed to a sofa, before his breathing tube was removed.

The couple, who had lived in hospital accommodation and had each maintained 12-hour vigils at his side throughout his short life, held his hand as he slipped away.

“Both of us were in bits, but it was such a relief. I know he’s in a better place, running around and eating chocolate. That’s how I like to think of him,” said the mother.

“I woke up this morning thinking I’d go to the hospital. Then I realised he was gone. It will take me a long time to realise that. It’s all I’ve known for so long.”

The mother, a shop manager who is originally from London, told the newspaper that she does not want to have any more children, fearing she will pass on the congenital myasthenic syndrome gene.

CMS, which disrupts the way signals travel between the brain and the muscles, affects one in every 500,000 births but its severity can vary.

In Baby RB’s case he was completely paralysed, unable to breathe unaided or indicate whether he was in pain or distress. Doctors informed his parents this condition would worsen with age and that he would require round-the-clock support for the rest of his life.

Presiding over Baby RB’s case at the High Court last week Mr Justice McFarlane said: “It is, I suspect, impossible for those of us to whom such an event has not happened to do more than guess at the impact of it upon these two young parents.”

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