Baby Charlie has passed away

[downzy]

50 minutes ago, soon said:

In your opinion.  Which you want the State to force on another family and another life.

Your vote for eugenics regarding cognitive function is a vote against your own self interest, I can assure you.

But that's not what's being discussed in the case of Charlie.  

He was going to die regardless of the treatment.  

This theoretical treatment that was offered would have only prolonged his life by perhaps a couple of months, maybe a year.  It was very unlikely he would ever regain consciousness.

In the meantime, he would continue to suffer from his condition and live in his condition.  

You need to be very careful when you accuse some one of advocating for eugenics.  That's a loaded term with all the historical context that comes with it.  

What is being discussed in this case is whether the parents were prioritizing the welfare of their child over their own needs and whether the state had an obligation to intervene.  

[soon]

5 minutes ago, downzy said:

But that's not what's being discussed in the case of Charlie.  

He was going to die regardless of the treatment.  

This theoretical treatment that was offered would have only prolonged his life by perhaps a couple of months, maybe a year.  It was very unlikely he would ever regain consciousness.

In the meantime, he would continue to suffer from his condition and live in his condition.  

You need to be very careful when you accuse some one of advocating for eugenics.  That's a loaded term with all the historical context that comes with it.  

What is being discussed in this case is whether the parents were prioritizing the welfare of their child over their own needs and whether the state had an obligation to intervene.  

He and I disagree.  Plain and simple.  I dont accept your paternalism; telling me how and when to use words that absolutely apply in this conversation.

[DieselDaisy]

1 hour ago, downzy said:

He was going to die regardless of the treatment.  

We are all going to die! We are all going to deteriorate and die - unless you are Mick Jagger. What right have you to apply a quantifiable worth on length and quality of a life?

The parents believed pursuing nucleosides would give him a certain standard of living and prolongation of life. They were denied the right to pursue that course. It is that simple - whether you believe the science was bona fide or not. They were denied their right as parents by a coercive unfeeling state.

[Axls Rocket Queen]

There's been a lot of misinformation thrown around about this case, particularly by Americans on Twitter with a fundamental misunderstanding of the case and how the system works here.  In the UK, children are given autonomy separate from their parents, so that if the parents are not acting in the child's best interest (whether obvious cases like abuse, or tricky situations like this where emotions can cloud judgement) the courts can intervene and a neutral guardian appointed as the child's representative.  In the vast majority of cases this never happens; decisions are made between the parents adn the doctors, however there was a breakdown in that relationship and so the courts were then involved.  The judiciary system here acts independent of the government, so to say this is a case of the state interfering or controlling people is frankly, nonsense.

Charlie had an extremely rare chromosomal disorder which was progressive and debilitating- he couldn't see, hear, breathe, move or swallow on his own and every neurologist who examined him agreed he had irreversible severe brain damage.  I don't have the specifics in front of me, but that conclusion was made months ago, meaning the child has been kept artificially alive for all that time while this was all being debated.  Every court who looked at the case agreed with the doctors- that it was unethical to continue Charlie's care, that he was suffering, that suffering was merely being prolonged, and no treatment is available that offered a real chance of improvement.  That is a huge principle in medicine in the UK- do no harm.  With regard to the treatment offered by the US doctor; the treatment has not been tested on lab mice with the same condition, let alone humans, and carried only a 10% chance of giving any improvement...with unknown potential side effects which could cause more suffering to Charlie.  That simply isn't good enough to put a child through potentially more pain for such a remote chance of any improvement, and no chance of anything like a normal life.  Also, the US doctor never even examined Charlie- he declined an invitation in January, withdrew the offer of help after actually reading his medical records, and admitted he himself had a financial interest in testing these treatments.

One thing I feel is not being talked about enough, and I am in no way saying the parents are to blame, but the media attention has certainly fuelled the awful way people have been treating the doctors at Great Ormond Street Hospital.  Hard-working professionals at an institution with a fantastic reputation, being subject to protests and death threats as they go to their unenviable work treating terribly sick children day in day out.  The way they have been treated is completely appalling, and should be a clear warning as to why there is a mental health and suicide problem within healthcare professions.

[soon]

So, anyone who disagrees with the English authorities on this mater is being duped by fake news on Twitter?  Its a great argument that lots of incredibly intelligent people use - world leaders even.  

[DieselDaisy]

I've seen nothing but fair and unbiased coverage to be honest, but it is a new disorder in this country that you now conclude that everybody who you disagree with has been mind warped by newspapers.

Edited July 30, 2017 by DieselDaisy
elaboration.

[downzy]

4 hours ago, DieselDaisy said:

We are all going to die! We are all going to deteriorate and die - unless you are Mick Jagger. What right have you to apply a quantifiable worth on length and quality of a life?

The parents believed pursuing nucleosides would give him a certain standard of living and prolongation of life. They were denied the right to pursue that course. It is that simple - whether you believe the science was bona fide or not. They were denied their right as parents by a coercive unfeeling state.

And Charlie's parents were wrong based on the consensus of the British medical community who know far more about his condition than you and I.

What they were denied was subjecting their child prolonged agony for a pipe dream.  Yes, we're all going to die, but Charlie lived by the grace of the state from the first place.  The state would also have to provide the necessary treatment and equipment to transport the child to the US for a treatment that would not have saved him.  

Parents lose their rights as parents all the time when they do not provide their child quality care. 

[downzy]

6 hours ago, soon said:

He and I disagree.  Plain and simple.  I dont accept your paternalism; telling me how and when to use words that absolutely apply in this conversation.

Eugenics is the effort to improve the genetics of a population.  How in which way is removing Charlie, a child who was never long for this world, from machines that were keeping him alive akin to eugenics?

[soon]

5 minutes ago, downzy said:

Eugenics is the effort to improve the genetics of a population.  How in which way is removing Charlie, a child who was never long for this world, from machines that were keeping him alive akin to eugenics?

Social hygiene is also squarely focused on the burden to able populations from the sick and disabled - this is squarely a eugenics issue whether he could hope to procreate or not.  

Like if you look up racism, the definition will not adequately list all the implications of racism.

[DieselDaisy]

3 hours ago, downzy said:

but Charlie lived by the grace of the state from the first place.  The state would also have to provide the necessary treatment and equipment to transport the child to the US for a treatment that would not have saved him.  

 

You are completely wrong. Firstly, the parents were denied legal aid, a benefit awarded recently to a Pakistani paedophile ring which is rather nice I'm sure you agree? They had to generate money themselves for the litigation. Secondly, they'd raised £1.3 million on GoFundMe by spring. If the uncaring and coercive state and its mean spirited welfare economics is your primary concern - it certainly isn't mine but fair enough - then transporting him to the United States would have removed Charlie Gard completely from the public state's sphere and consequentially the tax payers' burden. Towards the end President Trump was offering assistance, and Pope Francis was placing forward usage of Bambino Gesu.

I suggest you read more about the case.

[SoulMonster]

On 29.7.2017 at 9:07 AM, DieselDaisy said:

There was a chance this medical treatment could have given him a standard of living.

Nope. Charlie was doomed and would die. There was no hope of any standtad of living. Only death.

The question was never really how to help Charlie, but how to help his parents cope with the inevitable death of Charlie. And allowing them to be victims of numerous quacks who promised them hope where there were none, would never help them cope with his death, just present them with numerous bitter disappointments before the death arrived.

It is really sad to see how many amoral people tried to profit from this tragedy, including politicians who pander to their voters, priests looking to collect souls, and pseudo-doctors who wanted their GoFund money. Disgraceful.

[SoulMonster]

13 hours ago, DieselDaisy said:

We are all going to die! We are all going to deteriorate and die - unless you are Mick Jagger. What right have you to apply a quantifiable worth on length and quality of a life?

The parents believed pursuing nucleosides would give him a certain standard of living and prolongation of life. They were denied the right to pursue that course. It is that simple - whether you believe the science was bona fide or not. They were denied their right as parents by a coercive unfeeling state.

This is horrible. So if parents believed that magical ether would come seeping through the ventilation system and heal their pool child, then the doctors should have kept him on life support even longer? Or if his parents thought they could heal him by repeated dunking in water, they should be allowed to do so? Or if they believed that prayers would eventually help him, many millions should be spent to keep him in a vegatative state for as long as they needed? Parents simply DO NOT have the moral or legal right to subject their kids to more misery due to their own hopeful ignorance, nor to insist on endless millions of tax money being spent in that direction.

[DieselDaisy]

59 minutes ago, SoulMonster said:

numerous quacks

 

59 minutes ago, SoulMonster said:

pseudo-doctors

Before you accuse this doctor of being a 'quack' let's look at his credentials,

Quote

Dr. Hirano received his B.A. from Harvard College and M.D. from the Albert Einstein College of Medicine. At the Columbia University Medical Center (CUMC), he did his neurology residency training and a post-doctoral fellowship in neuromuscular genetics under Drs. Salvatore DiMauro and Eric Schon.

Currently, Dr. Hirano serves as Chief of the Neuromuscular Division, Co-Director of the CUMC Muscular Dystrophy Association clinic, and Director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases. He evaluated patients with myopathies and other neuromuscular disorders.

Dr. Hirano's research focuses on mitochondrial diseases and genetic myopathies. He is participating in the clinical trial of idebenone for MELAS patients. Together with Co-Principal Investigators, Drs. Salvatore DiMauro and J.L.P (Seamus) Thompson, Dr. Hirano is co-directing the North American Mitochondrial Disease Consortium (NAMDC).

Dr. Hirano serves on the NIH Therapeutic Approaches to Genetic Diseases (TAG) study section, Medical Advisory Committee (MAC) of the Muscular Dystrophy Association, and Scientific Advisory Board of the United Mitochondrial Disease Foundation.

http://columbianeurology.org/profile/mhirano

He had successfully carried out the nucleoside treatment on a child with a similar condition,

https://www.thesun.co.uk/living/3318065/arthur-olga-estopinan-arturito-charlie-gard-court-case/

 

[DieselDaisy]

Jesus, maybe you people should do some research,

- I’ve read here that the child was born and admitted to hospital with full brain damage and with fully developed muscular failure (he wasn’t - he was in fact born perfectly healthy, Mitochondrial DNA depletion syndrome being a progressive disorder).

- I’ve read that the British state would have funded transportation to the United States (they wouldn’t as the parents had raised 1.3 million).

- That the doctor is a 'quack' (he has a B.A. from Harvard College and M.D. from the Albert Einstein College of Medicine).

- That the media were biased and potentially inflammatory (they were not in the slightest, and in fact many agreed with the decision of Great Ormond Street).

- That the parents created a negative impression of Great Ormond and that we should somehow feel sorry for Great Ormond Street's staff (the parents were full of praise of Charlie's treatment at Great Ormond Street and were in fact the first to disparage abuse, e.g. 'death threats', received by staff-members).

Perhaps you all should actually read up on this case before commenting?

[SoulMonster]

33 minutes ago, DieselDaisy said:

 

Before you accuse this doctor of being a 'quack' let's look at his credentials,

http://columbianeurology.org/profile/mhirano

He had successfully carried out the nucleoside treatment on a child with a similar condition,

https://www.thesun.co.uk/living/3318065/arthur-olga-estopinan-arturito-charlie-gard-court-case/

 

I wasn't talking about that particular doctor, but all pseudo-doctors and quacks who tries to exploit parents' grief by selling them medicine and treatments that have not been shown to work. That is why I used the plural form.

As for Dr. Hirano, he is an established scientist who are currently testing out a new treatment method for various mitochrondral diseases. What he did in this case, to withdraw his offer to test an experimental drug when he realied that the little boy had permanent brain damage, was the ethically right thing to do. Maybe he shouldn't even have suggested his treatment might have helped when he wasn't aware of how far the disease had progressed with detrimental effect on the boy's body and brain? Anyway, I don't consider him a quack at all.

For every disease and disorder we have there are numerous people who believe they can help. This covers the whole gamut from religious fanatics who believe they can cure through prayer to established researchers who believe their developmental drug may have an effect. I feel for parents who have to try to navigate the numerous suggestions and offerings of help that come from well-meaning individuals. And then there are also those nefarious pepople who know that what they offer won't help, but are after money and attention. I can hardly imagine the duress parents must be in when they have to accept that life support is to be withdrawn while at the same time more or less credible people claim there is still hope. One cannot blame parents for doing everything, EVERYTHING, especially when the arguments for or against can rely on complex scientific data not readily accesible to the layperson. That is why some decision simply cannot be taken by parents. Their feelings will cloud their judgment and can ultimately, and in worse case, cause more distress and pain to both their child and themselves, and, in best case, just lead to the waste of more millions that could have been spent to treat kids with disorders and diseases that are treatable.

[SoulMonster]

35 minutes ago, DieselDaisy said:

Jesus, maybe you people should do some research,

- I’ve read here that the child was born and admitted to hospital with full brain damage and with fully developed muscular failure (he wasn’t - he was in fact born perfectly healthy, Mitochondrial DNA depletion syndrome being a progressive disorder).

He was born with a progressive disorder that starts out without any obvious symptoms. As some point he developed irreversible brain damage. Maybe he could have had a chance if the disorder had been diagnozed earlier, before it caused such devastating damage to his body? Maybe the experimental treatment then could have been applied?

[DieselDaisy]

Just now, SoulMonster said:

I wasn't talking about that particular doctor, but all pseudo-doctors and quacks who tries to exploit parents' grief by selling them medicine and treatments that have not been shown to work. That is why I used the plural form.

As for Dr. Hirano, he is an established scientist who are currently testing out a new treatment method for various mitochrondral diseases. What he did in this case, to withdraw his offer to test an experimental drug when he realied that the little boy had permanent brain damage, was the ethically right thing to do. Maybe he shouldn't even have suggested his treatment might have helped when he wasn't aware of how far the disease had progressed with detrimental effect on the boy's body and brain? Anyway, I don't consider him a quack at all.

For every disease and disorder we have there are numerous people who believe they can help. This covers the whole gamut from religious fanatics who believe they can cure through prayer to established researchers who believe their developmental drug may have an effect. I feel for parents who have to try to navigate the numerous suggestions and offerings of help that come from well-meaning individuals. And then there are also those nefarious pepople who know that what they offer won't help, but are after money and attention. I can hardly imagine the duress parents must be in when they have to accept that life support is to be withdrawn while at the same time more or less credible people claim there is still hope. One cannot blame parents for doing everything, EVERYTHING, especially when the arguments for or against can rely on complex scientific data not readily accesible to the layperson. That is why some decision simply cannot be taken by parents. Their feelings will cloud their judgment and can ultimately, and in worse case, cause more distress and pain to both their child and themselves, and, in best case, just lead to the waste of more millions that could have been spent to treat kids with disorders and diseases that are treatable.

He finally withdrew his offer because the level of brain deterioration had grown to such an extent making treatment ineffective. Why had the brain deteriorated to such an extent? Because of the litigation which stopped the parents bringing him to the United States at an earlier date.

The rest of your post is irrelevant. There were no quacks but this one doctor. There were no 'religious fanatics'.

2 minutes ago, SoulMonster said:

He was born with a progressive disorder that starts out without any obvious symptoms. As some point he developed irreversible brain damage. Maybe he could have had a chance if the disorder had been diagnozed earlier, before it caused such devastating damage to his body? Maybe the experimental treatment then could have been applied?

I was paraphrasing another poster. Glad to see somebody else understands the nature of a progressive disorder.

[SoulMonster]

Just now, DieselDaisy said:

He finally withdrew his offer because the level of brain deterioration had grown to such an extent making treatment ineffective. Why had the brain deteriorated to such an extent? Because of the litigation which stopped the parents bringing him to the United States at an earlier date.

The rest of your post is irrelevant. There were no quacks but this one doctor. There were no 'religious fanatics'.

As far as I understand tha case, the boy was severely brain-damaged before the offer came from Hirano. Despite this, there was agreement between the parents and hospital team to still apply for approval for the experimental treratment, but while this application was being processed the child suffered more brain-damage and the hospital team decided that there was no point any more. THEN the litigation started. So I think you are wrong here.

There were definitely quacks and religious fanatics in this case like in any high-profile case :/

[DieselDaisy]

2 minutes ago, SoulMonster said:

As far as I understand tha case, the boy was severely brain-damaged before the offer came from Hirano. Despite this, there was agreement between the parents and hospital team to still apply for approval for the experimental treratment, but while this application was being processed the child suffered more brain-damage and the hospital team decided that there was no point any more. THEN the litigation started. So I think you are wrong here.

There were definitely quacks and religious fanatics in this case like in any high-profile case :/

Brain deterioration was gradual. As early as January 2017, three months after he had been admitted (for breathing difficulties), the parents wanted to treat him with nucleosides and were blocked by Great Ormond Street, litigation ensuing. Dr Hirano deemed the deterioration too extensive just this month, late-July.

No, there were no quacks and religious fanatics. As far as I'm aware the nucleosides treatment in New York was the only treatment the parents were actively seeking, and their religious affiliation was never even made evident (not that it is relevant).

[SoulMonster]

On 29.7.2017 at 9:43 PM, dontdamnmeuyi2015 said:

Poor baby. I can't understand why babies are born only to suffer and die. He never got a chance at life.

Because humans, like all lifeforms, are subject to mutations. This is a necessity for species to evolve, which again is a necessity for life to exist on Earth (without the ability to evolve life couldn't exist). Unfortunately, many mutations will not be beneficial, but indeed be detrimental to the individual. That is the flip side of it all. Mutations are random, a few will be good, many will be neutral, and some will be damaging. This means that a significant proportion of all babies will be born with detrimental diseases, some causing them horrible pain that lasts until they die. Nature isn't cruel, nature is indifferent.

And still people believe in a good god.

[SoulMonster]

Just now, DieselDaisy said:

Brain deterioration was gradual. As early as January 2017, three months after he had been admitted (for breathing difficulties), the parents wanted to treat him with nucleosides and were blocked by Great Ormond Street, litigation ensuing. Dr Hirano deemed the deterioration too extensive just this month, late-July.

No, there were no quacks and religious fanatics. As far as I'm aware the nucleosides treatment in New York was the only treatment the parents were actively seeking, and their religious affiliation was never even made evident (not that it is relevant).

When the parents wanted to treat him, in January, he had already developed significant brain injury: http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html Despite this, the hospital agreed to apply for the transferal. Only later, when their request were being handled by the ethical committe, did the boy suffer more brain injury and the hospital withdrew their application. The litigation started in late February. So no, you are wrong to claim that the brain damage happened due to the delay caused by litigation. The brain damage happened before the child was correctly diagnosed and further brain damage occurred while the hospital awaited approval to have the child transferred for experimental treatment. But then it was deemed to be too late, something the parents and Dr. Hirano didn't accept, at first.

There were definitely quacks and religious fanatics in this story, like in ALL high-profile stories. You can barely have ANY disease without various offers coming your way. It could be cancer patients hearing about hospitals abroad offereing second opinions and experiental treatments, to ALS patients being offered alternative diets, to parents being told only a particular god can intervene and heal your child. It is quite awful. It is horrific, actually. If you are not aware of this then I hope you will never have to experience it for yourself. Whether the parents took them up on their offer or whether you are aware of them, is entirely irrelevant. You seem to not get that I was making a general point about this phenomenon that goes beyond the Charlie Gard case.

[DieselDaisy]

29 minutes ago, SoulMonster said:

When the parents wanted to treat him, in January, he had already developed significant brain injury: http://www.bailii.org/ew/cases/EWHC/Fam/2017/972.html Despite this, the hospital agreed to apply for the transferal. Only later, when their request were being handled by the ethical committe, did the boy suffer more brain injury and the hospital withdrew their application. The litigation started in late February. So no, you are wrong to claim that the brain damage happened due to the delay caused by litigation. The brain damage happened before the child was correctly diagnosed and further brain damage occurred while the hospital awaited approval to have the child transferred for experimental treatment. But then it was deemed to be too late, something the parents and Dr. Hirano didn't accept, at first.

There were definitely quacks and religious fanatics in this story, like in ALL high-profile stories. You can barely have ANY disease without various offers coming your way. It could be cancer patients hearing about hospitals abroad offereing second opinions and experiental treatments, to ALS patients being offered alternative diets, to parents being told only a particular god can intervene and heal your child. It is quite awful. It is horrific, actually. If you are not aware of this then I hope you will never have to experience it for yourself. Whether the parents took them up on their offer or whether you are aware of them, is entirely irrelevant. You seem to not get that I was making a general point about this phenomenon that goes beyond the Charlie Gard case.

You now seem to be ignoring the regressiveness of MDS!

Fact: up until July 2017 when the application was withdrawn, brain activity was deemed by the Dr in question sufficient to treat Charlie Gard with nucleosides - late-July, no longer.

[SoulMonster]

Just now, DieselDaisy said:

You now seem to be ignoring the regressiveness of MDS!

Fact: up until July 2017 when the application was withdrawn, brain activity was deemed by the Dr in question sufficient to treat Charlie Gard with nucleosides - late-July, no longer.

You now seem to not understand what I write. When he was admitted he had little brain injury, when he was diagnosed he had more, before the ethical committe had approved the application to have him treated abroad, he had suffered even more, and then the hospital said there were no point any more. Which the parents disagreed with, hence the litigation. How is this ignoring the regressiveness of the disorder?

The application (to the ethics committe) was withdrawn as a result of severe seizures with brain damage taking place in mid-January. Numerous experts at that time stated that any alternative treatments were futile due to severe and irreversible brain damage in the child. The only doctor, as far as I know of, who claimed there were still any hope, was Dr. Hirano, and he seems to not be fully aware of the situation (read the link I provided you with). So the large majority of experts agreed that proceeding with alternative treatment would be futile, probably cause further harm to the boy, and anguish to the parents.

You make it out to sound like the scientific consensus was that there were hope, but that nefarious hospitals or judges disagreed somehow and twarthed any treatment until it was too late That simply isn't the case.

[DieselDaisy]

Just now, SoulMonster said:

You now seem to not understand what I write. When he was admitted he had little brain injury, when he was diagnosed he had more, before the ethical committe had approved the application to have him treated abroad, he had suffered even more, and then the hospital said there were no point any more. Which the parents disagreed with, hence the litigation. How is this ignoring the regressiveness of the disorder?

The application (to the ethics committe) was withdrawn as a result of severe seizures with brain damage taking place in mid-January. Numerous experts at that time stated that any alternative treatments were futile due to severe and irreversible brain damage in the child. The only doctor, as far as I know of, who claimed there were still any hope, was Dr. Hirano, and he seems to not be fully aware of the situation (read the link I provided you with). So the large majority of experts agreed that proceeding with alternative treatment would be futile, probably cause further harm to the boy, and anguish to the parents.

You make it out to sound like the scientific consensus was that there were hope, but that nefarious hospitals or judges disagreed somehow and twarthed any treatment until it was too late That simply isn't the case.

I did not make out anything of the sort. The parents on national television stated that they had arrangements and assurances that Charlie Gard would not suffer at all, either through transportation (which is very easy to imagine to be honest) and treatment. I see no reason to not believe them. Further, nobody has denied that this treatment was 'something of a long shot'; the parents were actually under no illusions and were actually well informed about the procedure.

[SoulMonster]

2 hours ago, DieselDaisy said:

I did not make out anything of the sort. The parents on national television stated that they had arrangements and assurances that Charlie Gard would not suffer at all, either through transportation (which is very easy to imagine to be honest) and treatment. I see no reason to not believe them. Further, nobody has denied that this treatment was 'something of a long shot'; the parents were actually under no illusions and were actually well informed about the procedure.

No one could make any such assurances, because no one really knew whether the boy could feel pain. That being said, the consensus was that there was a significant probability that he DID feel pain, which was taken into account when the decision was made to move him to pallitative care. Here is an excerpt from the court proceedings: "Professor A said that Charlie is likely to have the conscious experience of pain. Professor A expressed the important need to weigh up the potential benefit of the smallest of chances (her views being that there were no chances) against the continued pain of intensive care, ventilator support and so forth. She said that it was her view and the view of other members of the team that Charlie is suffering and that that outweighs the tiny theoretical chance there may be of effective treatment. She said that she did not regard his pain of being of a low level of suffering, but something more significant." Maybe the parents went on television before the boy's pain had been thoroughly assessed? Maybe they spoke out of belief rather than relying on the experts?

You see no reason to not believe the parents over all experts? Okay. Is this because you have a general distrust of experts, because your are easily swayed by dispalys of emotion, or because you are so entrenched in your positon that you can't back down?

Looking at this from afar, as someone who have not read anything about this case untill very recently and have never seen or heard the parents speak, I don't really see how this case is special, expect from the load of media attention. It is a DAILY event that parents and doctors disagree as to further care and treatments of loved ones. This is completely natural. What is special in this case is the amount of media attention and how much people are using it for political gains, especially in the US. But at the root of it is the sadly very common conflict between the experience and rational cynicism of medical experts and the bereaved and utter desolation of loved ones having to let go.

The parents and the experts disagreed as to the probability of a successful alternative treatment. Here is what the father said in a litigation hearing: "We firmly believe that [Charlie] was sent to us as we are the only ones who look after him. We truly believe that these medicines will work." The judge, on the contrary, concluded: "[...] the entire highly experienced UK team, all those who provided second opinions and the consultant instructed by the parents in these proceedings share a common view that further treatment would be futile. For the avoidance of any doubt, the word "futile" in this context means pointless or of no effective benefit.". So I disagree with your statement that the parents "were actually under no illusions", in fact, it seems they were very much hoping against evidence that the treatment would work.

 

Edited July 31, 2017 by SoulMonster