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Anorak | Neon Roberts: who owns his body?

Neon Roberts: who owns his body?

by | 21st, December 2012

neon roberts Neon Roberts: who owns his body?

WHO owns your body? Neon Roberts has had brain cancer. He’s 7 years old. The first tumour was removed in October 2012. His mother, divorcee Sally Roberts, doesn’t want him to undergo radiotherapy. She thinks chemotherapy might be enough to prevent the return of his medulloblastoma.

Then his cancer came back. Surgery was scheduled. Treatment arranged. Ms Robert went into hiding. She was adamant that she did not want Neon to have radiotherapy.

Side-effects of radiotherapy include reduced IQ, infertility, stunted growth and further tumours.

On December 19, Neon underwent more surgery:

The Times recalls Ms Roberts’ time on the run:

She drove him to the home of a friend in West Sussex, who runs a centre offering alternative treatment in the form of oxygen therapy for people who have suffered brain injuries. Police raided the house in the early hours of Thursday. Roberts said she opened her bedroom door to find four officers shining a torch in her face.

15415815 Neon Roberts: who owns his body?Ms Roberts read of the Hufeland Klinik, in Germany. It says that “dissatisfaction with the range of treatments offered by orthodox medicine has grown among patients and many of the doctors treating them”.

Body, mind and soul are directly connected and form a harmonious whole. This is what many people feel, what latest science prooves and these are the principles we have been following here at Hufeland Clinic since 1985. Therefore we do not reduce chronic diseases – even serious deseases like cancer – to the effects on your organs or body, but – in both prevention and therapy – rely on concepts which consequently integrate the patient’s feelings and thoughts.

Support the immunesystem, don’t destroy: This is the maxim of our founder, Dr. med. Wolfgang Wöppel. An infinitely valid principle of a gentle, holistic therapy. We use this therapy to strenghten the body’s defence and healing powers and have already achieved amazing success where other methods have long failed.

Ms Roberts says:

“It’s about assisting the body with nutrients when the system has been undermined. I’m going to start an appeal soon. Cancer is a very expensive industry.”

Kevin Wright is sympathetic to her thinking. He’s the founder of Kict – Kids in Cancer Treatment.

It says:

Some foods feed cancers while other foods fight cancers.

And:

Here at KICT we know that every child has the potential to beat their illness if every weapon available to us is used. These weapons can be as wide ranging as cutting edge laser surgical techniques to simple dietry and lifestyle changes, from the latest gene therapies to simply finding and removing possible causes.
Unfortunately many of these treatments are not available through the National Health Service and cost more than most families can afford.

Mr Wright’s group has funded Roberts’s legal case. He tells the Times:

“There are children being brain damaged by radiation. Doctors do not produce research when asked, they just follow protocol.”

The matter reached the High Court.

There, a doctor warned:

“With no further treatment for medulloblastoma . . . it is highly, highly likely that he would die, and would die over a relatively short period of time. I believe it would be ethically wrong for that to take place.” The judge said: “Putting all those risks in the balance, against the expected gains, in the unhappy position he now finds himself, I am quite satisfied that surgery is in his best interests. We do not have the luxury of time.”

The court heard that Neon’s chance of living for five years has reduced from 80 per cent to 67 per cent due to the delays to his treatment.

The Times adds:

Two hospital trusts, which cannot be named, told the judge that the medulloblastoma cancer “will recur”, meaning that “the alternative [to no therapy] is death”.

The trusts cited evidence showing that for patients with similar tumours treatment with chemotherapy and radiotherapy resulted in a five-year survival rate of 82 per cent and an overall survival rate of 86 per cent. It would be “unethical”, they said, to deprive a child of radiotherapy.

Ms Roberts wanted a second opinion. She got one. A sinister sounding “Dr X” told a Court of Appeal judge:

“[Neon] will not survive this disease if he doesn’t have his radiotherapy and his chemotherapy, whatever the mum has written or listened to or blogged or whatever… parents who are susceptible to this sort of stuff will get hooked on it very, very easily.

But actually it doesn’t make sense. This boy has a malignant disease and he will die of it very quickly unless somebody gets his hands on him and treats him.”

Adding:

“If you shop elsewhere for an opinion on the disease, you are doing yourself and your child a disservice.”

So. Neon Roberts will have his cancer treated with radiotherapy.

Mr Ben Roberts, Neon’s father, did not object. He said:

“She wants to do everything she can and rely on natural remedies and things that are not too invasive, rather than radiotherapy and chemotherapy.She is worried about the damage that can be done. She wants him to be able to live a normal life. She doesn’t want him to be crippled or anything like that. Personally, I want everything for him. I want to make sure he has everything available to him. I understand there are lots of things that can be done to minimise the after effects of radiotherapy, with various other pre- and post-treatments. All the evidence I have been presented with has told me he needs to have that therapy, but I am also aware there are side effects. It concerns me as well.”

Neon has been ordered to live with his father for the duration of the treatment.

Says Ms Roberts:

“I think it’s a very indoctrinated system [and] that we have to explore other natural therapies… I have been doing this for six weeks now. I have been doing a crash course, that’s why I need more time.”

Mr Justice Bodey asked her:

“This might not be relevant, but is this underpinning your attitude to this case, that you have some tie-up with with someone in the media? Are you driven by the fact there’s a story there?”

She denied that.

Mr Justice Bodey added:

“The gold standard, orthodox, Children’s Cancer and Leukaemia Group approach has determined after long investigations that radiotherapy followed by chemotherapy is necessary to produce optimum survival rates. Before radiotherapy was developed, patients invariably or almost invariably died.”

Jonathan Waxman, Professor of Oncology at Imperial College London, notes:

For Neon’s parents the choice was stark — death or a chance for life. His mother may not be able to see that choice clearly because she is overwhelmed by the possibility of Neon suffering from the traumas of treatment, but to encapsulate the options in a glib phrase: what is better, some chance of normal life or no chance at all?
The judge chose the former. He ruled that further treatment should go ahead after a specialist said an operation needed to be carried out urgently. And yesterday the judge was told that the little boy’s operation had gone well. Today the judge has to decide whether Neon should also undergo radiotherapy.

As Mr Justice Bodey said of the decision he has to reach: “It is a balance between the disadvantages of radiotherapy and the improved prospects of living. You can only suffer these detriments to your life if you are alive.”

Mr Justice Bodey is not a doctor, but he listened to the expert witnesses and trusted in the science of cancer treatment.

What to do?



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