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In December 2012 we covered the heartbreaking story of Neon Roberts and his mother, Sally’s, fight to exercise her parental rights to choose a form of cancer treatment that would prevent long-lasting health consequences. Subsequent articles following Sally and Neon Roberts’ case highlighted what must be every parent’s worst nightmare – state control over your child’s health. Last night, the UK’s Channel 4 aired a Cutting Edge documentary entitled “You’re Killing My Son…The Mum Who Went On The Run”. Despite its title, this fly-on-the-wall programme has been filmed largely from the perspective of Neon’s father, Ben, with what appear to be carefully selected clips from Sally and Neon. Whether it’s a genuine attempt to portray events as they occurred, or a subtle deterrent to other parents considering going against the medical establishment, is a moot point.
The editor’s dark arts
In the first couple of minutes, viewers are left in no doubt that Sally Roberts went into hiding with her son, “To prevent him having the treatment he needs,” and that the entire distasteful episode in Neon’s life has, “Challenged our understanding of parenthood”. Certainly, Neon’s illness and treatment continues to present a challenge – but not, in our opinion, to parenthood, but to medical tyranny and state control over parenthood! Throughout the film are constant reminders of news reports of Neon’s story, leaving the viewer in no doubt that it was Sally standing in the way of Neon’s ‘life-saving’ treatment. There is only one cursory mention that at the heart of the family feud, the legal battles and the media frenzy is, “A small boy trying to cope with cancer”. A 7-year-old boy who was also trying to come to terms with his parents’ separation and their divergent opinions about his treatment, let alone his subsequent separation from his twin sister, Electra, and his mother.
While Sally is reported to have become, “Very hostile to conventional medicine” during the process, Ben is seen on camera saying, “I don’t know what her goal is, she seems to be on some kind of mission”. But her mission, if one can call it that, appears to be that of any mother trying to do the best for her child, by finding a treatment option with the lowest risk of future neuro-cognitive and other disabilities. Sally has always said that she strongly believes, “That the conventional treatment is worse than the condition itself,” and it would seem that Neon has been hit hard by the side effects the doctors predicted.
Sally’s not for turning
When interviewed yesterday morning prior to the screening of the documentary, Sally Roberts was adamant that she has never been against medical treatment, just the kind of treatment that the judge ordered for Neon. Although the interviewers treated her gently, they repeatedly tried to persuade Sally to rescind her views on the radiotherapy that Neon is undergoing. But Sally wasn’t budging. According to Sally, the proton beam therapy that the UK National Health Service (NHS) denied Neon, despite a long campaign by his mother, is due to become NHS standard of care in 2017. Way too late for Neon.
State tyranny vs parental choice
Sadly, this heavy-handed, moral high ground approach from the authorities appears to be taking hold around the world.
In April 2013, a Sacramento couple took their 5-month-old baby boy to Sutter Memorial Hospital to be treated for flu symptoms. They had concerns over his care, especially after the doctors began talking about heart surgery for a heart murmur! Having requested a second opinion, the mother took her son out of the hospital to get the opinion at Kaiser Permanente hospital. Medical records from the doctor at Kaiser Permanente said the baby was clinically safe to go home with his parents. The next day, police and child protective services arrived on their doorstep and removed their child.
In May, Australian newspapers were full of the ‘NoJabNoPlay’ campaign, where non-vaccinated children are being ostracised and denied school and nursery places. The government in New South Wales has even passed historic legislation to support the campaign. Even more disturbing is the outcry by Australian MPs over ‘exemptions’ for those refusing vaccination on philosophical, religious or medical grounds.
Just last week, a young mother from Brooklin, USA, was threatened with removal of her 3-month-old son by doctors and the State of Maine. When officials learned she had been feeding her baby with homemade goat’s milk formula, they ordered a mandatory overnight hospital stay with an edict to feed the baby store-bought formula. Despite complying with all their mandates, the State continues to monitor the situation and won’t leave the family alone.
The freedom to choose
The last few years have seen tensions escalate between mainstream and non-orthodox views of healthcare. The same is true of the public’s desire to choose how they and their families treat their disease, especially in the case of cancer, and the desire of authorities to impose some vision of ‘ideal’ treatment on them. That this is a now a human rights issue is not in question for those of us who believe in freedom of choice in healthcare. But it is probably going to take more examples of courageous people like Sally Roberts standing their ground before this increasing trend is finally stopped.
It’s heartbreaking to see the contrast between the post-treatment Neon of today and the pre-treatment Neon of just a few months ago. And, while everyone – except Sally – pats themselves on the back for a job well done, because the latest scans show the cancer has gone, no one is questioning the wisdom of putting a terribly ill child through further months of gruelling treatment!
Neon, Christmas 2012, pre chemotherapy and radiotherapy treatment
Source: “You’re Killing My Son…The Mum Who Went On The Run”, Channel 4 TV
Neon, 2013, after initial chemotherapy and radiotherapy treatment
Source: “You’re Killing My Son…The Mum Who Went On The Run”, Channel 4 TV
Comments
your voice counts
14 August 2013 at 8:22 pm
These filthy vile pharmaceutical company's make the mafia look
like petty criminals,just who do they think they are?
14 August 2013 at 8:48 pm
Whilst I support ANH on most things I have to say there is often no right and no wrong with cancer. Conventional treatments often dont work and cause damage but also, alternative treatments even famous ones with a reputation in relation to cancer also often dont work. I know this from personal experience.
15 August 2013 at 1:44 pm
Hi, thanks for your comment. You're quite right in the sense that each patient is different, with varying reasons for their cancers and a bewildering array of manifestations of the disease - so no one treatment can ever be the panacea for every cancer. We will say, however, that mainstream treatments are limited, often poisonous, frequently carcinogenic, often ineffective and highly expensive.
But in Sally's case specifically, a focus on so-called 'alternatives' is misleading. Her major request in terms of Neon's treatment was for the NHS to consider proton beam therapy (PBT) for him, instead of standard, whole-brain radiotherapy. PBT is targeted radiotherapy that is known to cause fewer long-term side effects than standard radiotherapy. It has been described as "ideal" for Neon's cancer, medulloblastoma: http://www.library.nhs.uk/booksandjournals/details.aspx?t=medulloblastoma+proton+beam&stfo=True&sc=bnj.pub.MED&p=1&sf=srt.publicationdate&sfld=fld.title&sr=bnj.pub&did=22553304&pc=1&id=1. The NHS speaks of it in glowing terms and makes it available for selected cases: http://www.specialisedservices.nhs.uk/service/proton-beam-therapy. It is by no means an 'alternative' therapy, and yet the NHS point-blank refused to consider it for Neon. One has to ask: why?
14 August 2013 at 9:02 pm
The attitude to Sally and the treatment of this poor child ,beggars belief. THEY have done a great job with Neon - just look at the poor child being treated with one size fits all, treatment. It is tragic what EGO AGENDAS do to the human body. But I Know THEY will be well pleased with themselves.
14 August 2013 at 9:03 pm
What we have here and throughout the BBC is the infiltration of vested interests into our public media. We expect the organs of information to be unbiased but increasingly, what we are receiving is propaganda, courtesy of programmers and reporters who as members of organisations such as 'Health Watch', 'Sense about Science' and 'Campaign Against Health Fraud'.
Back in the early nineties, I took to task Nick Ross for his biased reporting on his radio phone-in program, 'Call Nick Ross'. Nick Ross was a member of the so called Campaign Against Health Fraud, and since I was able to point out that they had received drug company money, Nick Ross shouldn't have been talking up new pharmaceutical developments whilst playing down concerns. After my complaint, the program no longer aired.
Now complaints about bias are met with blase comments such as, 'but this is what the evidence says' and a total unwillingness to accept viewpoints that run counter to theirs. It is generally accepted that following Blair's entry into Government, entryism by agents of the corporatist state reached saturation levels
I guess that unless enough of us are willing to call their bluff, they will continue to hoodwink us with impunity. To quote Edmund Burke,
'All that is necessary for evil to prevail is that good men do nothing'
14 August 2013 at 10:08 pm
The sad thing is that the people working for these organisations believe they are doing it all for the best of the child when really they know nothing. If only there were some way to stop this dumb arrogance. We have to pin all our hopes on ANH and the other good organisations and individuals who are doing their best to give us the truth, and offer them as much encouragement and support as we can.
15 August 2013 at 8:08 am
This is the worst case of government tyranny, so far, but no doubt there is worse to come.
The ONLY cures from cancer have proved to be dietary, over the last 100 years or so, and chemotherapy is known to cause cancer. Radiation we know causes cancer, and surgery is not even close to curing cancer.
15 August 2013 at 10:05 am
The best solution for Neon is in a German clinic. Try Marinus Clinic, nesr Munich, it is not expensive as you might thing. Non evasive treatment with no side effects. Many American oncologist go to Germany rather than have their own treatments.
Many of us are with you.
15 August 2013 at 11:13 am
People may be aware of the work of Dr Stanilaus [sic] Burzynski and the persecution he has had to endure from the authorities in attempts to discredit him and to stop his Antineoplaston therapy.
Herewith an extract from the latest item by the Orthomolecular Medicine [ANH-Intl note: the original source of this quote appears to be the Facebook page of Burzynski: The Movie]:
"The first ever independent randomized controlled clinical trial using Antineoplastons for the treatment of cancer at Kurume University in Japan—was rejected by Lancet Oncology this week. Even more interesting, the Japanese consulted with one of Britain's top oncology peer-reviewers to ghostwrite the manuscript, to make sure it was in perfect format for the Lancet.
The Lancet's reason for the rejection? It had nothing to do with the science or the study's design—but instead the Lancet simply said "we don't have enough room in our journal for this randomized study on Antineoplastons". In other words, the Lancet and the cancer establishment as a whole does not have any room for an oncology paper that involves cancer being cured by a paradigm-shifting invention, especially when the study is a randomized study which elevates "anecdotal" to "proven"—since the randomized study is the industry's holy grail of clinical testing. If the Lancet had accepted it—they would have ironically been Lanced.
The fact is, Antineoplastons do not fit the Pharma mold, and therefore they are not allowed in. It's just the way our system works. Science is secondary to profit in today's market. Anyone who feels the need to come up with conspiracy theories to justify the ignorance toward Antineoplastons, just doesn't have a basic understanding of how our system works. This is just business 101.
Unless there is a major shift in our social consciousness, profit will always trump scientific truth. The entire industry is clever enough to realize that if Antineoplastons were allowed onto the market, their patents would eventually run out and they would eventually become a generic drug. And that can't be allowed to happen. If all companies within Pharma are allowed to make and sell Antineoplastons (as they do the antibiotic), who in their right mind would choose destructive and carcinogenic chemotherapy or radiation ever again? The industry knows this, and to protect the bottom line and Wall Street as a whole, Antineoplastons simply can't be allowed in.
However, the Japanese randomized studies WILL be published, but likely not in a journal that serves the industry and the owners who dictate the journals' content."
15 August 2013 at 12:27 pm
I agree with you that Alternative medicine can't give guarantees for their effectiveness any more than can Conventional medicine. The real issue is one of choice and having that removed by Governing bodies who decide that they know what is best for us. They don't! and choice should be left in the hands of the individuals, or in this case n the hands of the parents. If we continue to sit back and accept the decline of our freedom to choose we become no more than a cog in the wheel of existence!
No thanks!
17 August 2013 at 12:30 pm
I watched the documentary and felt the pain of all sides. When illnesses of this kind occurs, generally things happen so quickly and those involved don't have enough knowledge to make their own informed opinions. So they very much rely on the knowledge and opinions of the mainstream medical system and trust that they are the experts. In this case Sally has strong views and absolute faith of how things should have proceeded. That she as the childs mother should be so undermined and ultimately powerless is very upsetting.
I thought that her ex husband was shown in quite an open minded way. Whilst the documentary wasn't showing a bias towards alternative treatment, I didn't feel that it was pushing the conventional route either. It just so happens the convention route is what most people are prepared to trust in, for whatever reasons, so most people will be watching with that bias already formed. He seemed prepared to follow some of the alternative treatments alongside conventional treatment. His comment about Sally being on a mission, was actually correct. He doesn't have her opinions and zeal, he's quite prepared to trust in conventional treatment. He doesn't have a battle to fight alongside the fear of losing his son for what he believes.
If an adult makes a decision for themselves about what treatment to follow, then that's OK. Their friends and family may disapprove but ultimately so what. There was a point in the doc when Sally went to collect Neon to take him for treatment in an oxygen tank (or some such, I don't know exactly what it was) and Neon didn't want to go. How do you make a child drink green juices? Plenty of people will be of the mind that an ill child should lead as nice and comfortable a life as possible, be as little distressed and upset and lead as normal a life as possible. When should a child be forced to spend time in an oxygen tank? This is all very uncomfortable and I feel I can feel compassion for both sides.
I have huge admiration for Sally and her beliefs. I think she has conducted herself with great dignity. I hope that Neon recovers to lead a long and happy life.
18 August 2013 at 11:09 am
Oh my goodness. My heart goes out to this little boy. And where is the fairness in this. What about Sally having a voice and putting her side forward.....oh...and having it filmed from an open minded production company :) x
18 August 2013 at 11:46 am
Dear Alliance for Natural Health,
I thank you for your support. It has been obvious to many from the real health world, what is going on here and that the mainstream have been doing a rather good job of making me out as an irrational Mother. They have been working very hard at making an example of me. This is what happens people, if you think outside the box and go against mainstream ideas and the system in general.
When Neon had his tumour removed back in October 2012 it was deemed a total resection. Within days, they then said, actually we think there is a 1cm tumour remnant. The relief I felt, when informed, this was in fact just scar tissue, was enormous.
I thought the worst was over and that Neon was on the road to recovery. Alas, this was just the beginning of the unfolding nightmare.
I found it very strange that Neon who had been given the all clear, was now being put on the conveyer belt of such an extreme treatment plan. I read the list of side effects, as his Mother I felt my job was to protect Neon.
When I went away for those 2 days it was to get HBO for Neon as Oxygen is a well documented support for the immune system. The witch hunt and media circus that followed was overwhelming to say the least. I had disappeared just as the 42 days was up. I thought that the NHS would back off as Neon would no longer be able to be part of there 42 day trial. No such luck. They gave him another MRI scan whilst I was in court and what they previously had considered scar tissue....they now decide, was actually in fact, remnant tumour, meaning that after more surgery, Neon would essentially be back to day 1 of the 42 days so he could be put back on their trial.
Court was a total waste of time. I was not given the opportunity to present any other alternatives. Instead they had me searching other countries for children who had medulloblastoma and survived without radiation. I had been informed studies were out there, unfortunately we never found them for young ones older than 3yrs.
It was in fact after court that I discovered Proton beam therapy. I had someone approach me who had heard of the case and I spoke to the Professor in charge, who agreed that he would take Neon and that my son was a perfect candidate for this far less invasive treatment, using protons not X-rays, causing less damage to surrounding tissue with fewer side effects. Strangely enough, this treatment will be used here in the UK from 2018. I approached Neons lead consultant who said there was no proof of what I was saying and blocked me from taking Neon. I then watched Neon deteriorate before my very eyes. Not from cancer, as that was gone but the harsh treatment they were using as a precautionary measure to insure it did not come back.
I tried so hard to appeal but was knocked down from every direction, preventing me from getting it back into court. First time round admittedly, I was in way too deep, as I did not know much about cancer but just knew what they were doing was very wrong. Back in January I had built a strong case and know that if it had got back into the courts, I would of had a very good argument against the protocol being used on Neon.
The documentary that aired the other night on channel 4 was an infringement upon my rights. I filmed with her a few times over the Christmas period but it quickly became obvious that she was siding well and truly with the conventional camp. I pulled out. The fact that she was a family friend of Ben, Neons father also rung alarm bells. I did ask her to stay away from me and my son, but Ben jumped on board and helped finish the film. I never gave my consent. I am surprised how they could screen it without my permission. The documentary did a good job of making me out to be bad/mad, Ben to be good and Neon to be living happily ever after... which could not be further from the truth. Neon is still suffering at the hands of the NHS whilst I try to do whatever I can from a distance, seeing Neon as much as possible and now working at getting the true story out there.
The recent documentary had an opportunity to inform the public and do some proper investigative journalism, sadly this was not the case.
This is a huge subject. What is needed now, is a fair, balanced, wider representation of what is happening here in the UK. We may be being denied other effective therapies but let us have an open discussion/debate in the public arena so once we are given the true facts, we can make our own decisions rather than them being imposed upon us by others with vested interests.
Thanks again for your support ANH, I have appreciated it so much at a time, when all I have ever wanted, is what is best for my son.
Sally Roberts
Your voice counts
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