THE mother of a dying six-year-old boy has told of her exhausting struggle to provide his round-the-clock care.

The Gazette told earlier this week how the woman, who wants to stay anonymous, had launched a legal fight claiming health chiefs were not meeting her son’s medical needs.

At her Colchester home yesterday, the trained nurse who has three other children explained the reasons why she needs assistance in caring for the youngster.

She said: “We don’t know how long my son is going to live for and I just want to be spending this time playing with him and being a mum to him, rather than a nurse.”

Her son is severely brain-damaged and, although doctors cannot predict exactly how long he has left to live, they say he is nearing the end of his life.

He can interact with people, enjoy music and even plays a therapeutic harp.

But he requires doses of medicine every hour from 5am to midnight and oxygen to help him breath.

He is rigged up to machines that feed him and pump drugs into his bloodstream and he needs assistance to go to the toilet. In addition, he requires constant watching because he often has fits.

Essex County Council has provided the boy with a team of carers who come in to look after him at night, but they do not have the knowledge to make decisions about his treatment so have to wake the mother every time he needs attention.

The mother also has the option of staying with the boy in a hospice for 48 hours a week, which she said she would consider if she was offered it.

Alternatively, trained hospice staff could stay with her for 22 hours.

However, that still leaves large swathes of time when she has to care for him on her own. While her medical training makes it possible for her to do so, the mother is under constant strain because she is awake at all hours and has other children to look after.

In September, she crashed with fatigue and asked health trust NHS North East Essex to step in.

When the trust was unable to provide the care package she asked for, the woman’s solicitor, Alison Fiddy, successfully applied to the High Court for permission to launch a judicial review.

Ms Fiddy said: “It shouldn’t come as a surprise to the trust the boy needs this level of care because it has known about his condition for years.

“If it had been looking for nurses six months ago, it might have found some by now.”

NHS North East Essex says it wants to help, but a team of six highly-trained nurses would be needed to look after the boy and it has been unable to find any.

It also said the woman had turned down an alternative option of moving the boy to a hospice for a long period.

Alan Mack, director of corporate development and governance, said: “We don’t feel this delicate and complex situation can be best resolved by an on-going debate through the media. We do not wish to put at risk the continuing confidentiality of the patient.

“We strongly refute claims – which we can support with evidence – that we have only recently sought to find a workable solution to this matter and that we have not presented the mother with options.

“I am pleased to report real progress is being made which, naturally, we will be discussing with the mother.”