Discussion
Zoon said:
Is it similar to the parents who got arrested for taking their child to Prague who also had no chance?
http://www.bbc.co.uk/news/uk-england-32013634
Completely different, that was an issue of which treatment was most appropriate, a proven treatment available immediately advocated by the doctors but refused by parents, vs an unproven treatment not generally available. The parents fled to Spain, causing a delay in treatment, Prague came later. We unlikely to see detailed analysis in MSM, it turned out OK despite the odds not because of them.http://www.bbc.co.uk/news/uk-england-32013634
Edited by 4x4Tyke on Wednesday 5th July 15:08
Wiccan of Darkness said:
ModernAndy said:
I've been following this case and found your commentary very interesting. I'm very much on your side of the argument but I do wonder, from my much less informed position, whether there was or is any hope at all.
Presumably the brain damage at present is such that the child will never experience an 'awakened' state even if he does live to an older age. I also presume this was a natural consequence of the illness and very little could have been done about it. However, there's a 9 year old child in America who is said to have the same condition. The pictures of him look fairly bleak and I'm not sure what sort of state or level of pain he is in but one would have to assume a slightly better one than Charlie Gard at the moment.
Do you happen to know if the 9 year old child in America mentioned in the news articles has the exact same illness as Charlie Gard or if it's slightly less severe or has involved less complications? If so, is there a distinction between them, i.e. perhaps the 9 year old child got a treatment of some sort at an earlier age than Charlie Gard?
Do you have a link to this other childs case, I'm workign at the moment and just used lunch break to comment elsewhere. If the other child is 9 then I'd expect the mitochondrial DNA damage is linked to a respiratory protein. Charlie, by contrast has DNA damage that codes for the enzyme that is needed to replicate ALL respiratory proteins. As these proteins are fundamentally important, there's duplicate DNA to code for them, or the damage affects the tertiary and not quaternary state which would be a very mild form of mitochondrial disease (I use the term mild loosely, as a moderate form is very fatal and a severe form won't make it past week 12 of gestation).Presumably the brain damage at present is such that the child will never experience an 'awakened' state even if he does live to an older age. I also presume this was a natural consequence of the illness and very little could have been done about it. However, there's a 9 year old child in America who is said to have the same condition. The pictures of him look fairly bleak and I'm not sure what sort of state or level of pain he is in but one would have to assume a slightly better one than Charlie Gard at the moment.
Do you happen to know if the 9 year old child in America mentioned in the news articles has the exact same illness as Charlie Gard or if it's slightly less severe or has involved less complications? If so, is there a distinction between them, i.e. perhaps the 9 year old child got a treatment of some sort at an earlier age than Charlie Gard?
I'll have a look at what I can find out about the 9 yo and report back later tonight. I can tell you now though, without looking that it will be a different form of the disease.
i have just read the full court of appeal document and it makes it very clear that when the judge questioned the US DR about the treatment, that he had no medical evidence for his claims and the chance of improvement was "zero"
I do wonder what hospital in the US is offering treatment as this only came via the White House press office and they seem very coy about saying who it is.
Also all the stupid people fail to understand that if Charlie goes to Rome, he is not going for a "cure" but for palliative care. He will die there.
I do wonder what hospital in the US is offering treatment as this only came via the White House press office and they seem very coy about saying who it is.
Also all the stupid people fail to understand that if Charlie goes to Rome, he is not going for a "cure" but for palliative care. He will die there.
4x4Tyke said:
Roofless Toothless said:
There are two sets of doctors involved here.
One set in London working for the NHS say that he has no chance.
The other set in the USA say that treatment is worth a go.
The second set will be paid tens of thousands of dollars for the course.
Which do you trust?
Also one set of those doctors is fully conversant with the situation and one set are not.One set in London working for the NHS say that he has no chance.
The other set in the USA say that treatment is worth a go.
The second set will be paid tens of thousands of dollars for the course.
Which do you trust?
There was a bloke on LBC this morning, knows and speaks with the family regularly.
The American thing is nome intrusive and is in fact just a food supplement which means they would just have to replace what Charlie is being fed with now, with the American stuff.
The family asked if it could be flown over to try?
They were told no.
The way I see it is, we are not paying so why can they not at least try what ever it is they want to, as they are clearly not for giving up.
The volume of emotive idiocy on social media is something to behold.
Awful for the parents, but it's clear when spending 5 minutes reading some facts about the matter that there's only real outcome.
To take a slightly cold point of view, I hope this matter isn't detracting from the capability / capacity of GOSH (cost / time) and impacting on others.
Awful for the parents, but it's clear when spending 5 minutes reading some facts about the matter that there's only real outcome.
To take a slightly cold point of view, I hope this matter isn't detracting from the capability / capacity of GOSH (cost / time) and impacting on others.
ModernAndy said:
There's very few details of his condition but an article in which he features is here: https://www.thesun.co.uk/news/3949325/charlie-gard...
I got the name, and managed to find a washington post article on the 9 yo.https://www.washingtonpost.com/national/health-sci...
From that I found this article through biomed https://www.ncbi.nlm.nih.gov/books/NBK114628/
I've had a read, it's very interesting (for me) and this was the paragraph that explains everything.
Academic paper said:
Pathology. Histopathologic findings on skeletal muscle include prominent variance in fiber size, sarcoplasmic vacuoles, and increased connective tissue. Ragged red fibers are invariably present. Succinate dehydrogenase (SDH) activity is increased; cytochrome c oxidase (COX) activity is low to absent.
Electron microscopy shows abnormal mitochondria with circular cristae [Lesko et al 2010].
Cytochrome C oxidase is one of the respiratory proteins. In the Art Estopinian case, the abscence of cytochrome C activity and misshapen mitochondrial cristae IS A COMPLETELY DIFFERENT type of mitochondrial disease. Basically, only one respiratory protein is not working. Cytochrome C is at the end of the oxidative phosphorylation cycle but the absence of function in the mitochondria doesn't mean it's totally absent at all. All other respiratory proteins are in working order.Electron microscopy shows abnormal mitochondria with circular cristae [Lesko et al 2010].
Charlie on the other hand, has all the DNA for working respiratory proteins, but the DNA that makes the enzyme that forms all these proteins is corrupted, meaning ALL of Charlies respiratory proteins are ineffective. They're not absent, they are replaced but far too slowly.
I can compare it to the 4th road bridge and painting it. Imagine the bridge are the respiratory proteins, and the painting is the maintenance. In a normal healthy person, the painting is done at the same rate as it peels and weathers, so there's no issue. But in Charlie, the guy painting the bridge is old, slow and knackered. So by the time half the bridge is painted, the rest of the bridge has rusted away. Imagine in your minds eye, the 4th road bridge, one being painted at adequate speed by a young fit painter; and again with some old duffer who just can't keep up.
Let us now compare the difference between Art and Charlie.
What I want you to do is imagine a pile of cannon balls. Big heavy cannon balls. Put them on a column, on the left in your mind. Now create 6 cuboids, and put the largest one next to the cannon balls, and arrange them in decreasing size so the smallest is on the right. Now change the cuboids into wardrobes. Big wardrobe, down to a small bedside cabinet.
Start rolling the cannon balls down a chute, until it drops on to the top of the first wardrobe. Then onto the second, and so on until the cannon ball drops on to the last cuboid, the bedside table. It's a bit like a game of kerplunk, or screwball scramble, with marbles rolling down a chute and dropping down a hole.
Each time a cannon ball drops on to a wardrobe, the wardrobe shakes and bits fall off. Get these cannon balls rolling, rolling down each chute, dropping onto the tops of each wardrobe, bom bom bom bom....but as each wardrobe, or whatever cuboid you prefer to use, gets knackered, a little oompa loompa runs in and pushes the broken wardrobe out of the way and replaces it with a new one.
Here's a diagram to help...
Each time a cannon ball drops on the top of the wardrobes, it fires a hydrogen ion across the membrane.
Here's another pic to help explain
In Arts case, the cytochrome C is not working (it's cyt c in the first drawing). That's ineffective, but all the other bits are OK. The really important one is the ATP synthase enzyme and since that's still working for Art, enough ATP is produced to sustain life till he's 9.
In Charlies case however, those little oompa loompas that are replacing the broken wardrobes, aren't working. So all of those respiratory proteins just don't work very well, even the important last one. They're just not replaced fast enough. The forth road bridge isn't being painted fast enough. Nothing is missing or not working, unlike with Art. Charlie has functioning cytochrome C. Art doesn't. But all of Charlies cytochromes are just worn out. In the same way repeatedly dropping a cannon ball on to the top of a wardrobe eventually knackers the furniture, having all those little oompa loompas run in and replace the broken wardrobes in a normal person to keep things going, not so for Charlie.
It's very complicated but I've done my best to explain it in a way that a lay person can understand and visualise in their minds eye whats going on. But Arty Estopinian has a completely different type of mitochondrial disease to Charlie Gard.
I hope I've presented this in a way people can understand.
La Liga said:
The volume of emotive idiocy on social media is something to behold.
Awful for the parents, but it's clear when spending 5 minutes reading some facts about the matter that there's only real outcome.
To take a slightly cold point of view, I hope this matter isn't detracting from the capability / capacity of GOSH (cost / time) and impacting on others.
I'm all for the cold point of view. We're constantly told that the NHS has no money, yet here it is fighting an absurd court case at vast expense. Awful for the parents, but it's clear when spending 5 minutes reading some facts about the matter that there's only real outcome.
To take a slightly cold point of view, I hope this matter isn't detracting from the capability / capacity of GOSH (cost / time) and impacting on others.
The poor little sod is hosed, I think everyone knows that, other than the parents. The parents have raised a sack of cash, and surely the best thing for the hospital to say is 'sure, crack on, you know where Heathrow is....'. With a bit of luck the poor child would pass away peacefully at about Junction 3 of the M4, and his room would be occupied by some other child needing help.
Instead we end up with this absurd charade which isn't doing anyone any good and we're all paying for.
rxe said:
La Liga said:
The volume of emotive idiocy on social media is something to behold.
Awful for the parents, but it's clear when spending 5 minutes reading some facts about the matter that there's only real outcome.
To take a slightly cold point of view, I hope this matter isn't detracting from the capability / capacity of GOSH (cost / time) and impacting on others.
I'm all for the cold point of view. We're constantly told that the NHS has no money, yet here it is fighting an absurd court case at vast expense. Awful for the parents, but it's clear when spending 5 minutes reading some facts about the matter that there's only real outcome.
To take a slightly cold point of view, I hope this matter isn't detracting from the capability / capacity of GOSH (cost / time) and impacting on others.
The poor little sod is hosed, I think everyone knows that, other than the parents. The parents have raised a sack of cash, and surely the best thing for the hospital to say is 'sure, crack on, you know where Heathrow is....'. With a bit of luck the poor child would pass away peacefully at about Junction 3 of the M4, and his room would be occupied by some other child needing help.
Instead we end up with this absurd charade which isn't doing anyone any good and we're all paying for.
I have read the court transcripts and they tried so hard to meet the parent's wishes. The judge even questioned the US Doctor who the phone about his treatment and it is clear by his answers, that there is no proof that this treatment will help and the Dr just wants to try, to see what it will do. The Judge didn't quite call him a liar, but reading between the lines i don't think he was impressed
They are also very clear that they believe the child is suffering and the fact they haven't said 'stuff it take the kid'in the face of all the hate is admirable
La Liga said:
Thanks for taking the time Wiccan.
It's a skill to distil complex and technical matters for the layman, but with a couple of reads I think I understand it so I think you've succeeded.
as above.It's a skill to distil complex and technical matters for the layman, but with a couple of reads I think I understand it so I think you've succeeded.
The knowledge to understand all this and subjects of a similar nature is truly outstanding. Couldn't for the life of me be able to remember all this!
Tankrizzo said:
Thanks for the detailed explanation Wiccan, fills in a few gaps from the published stories.
Seconded. As further posts. 
As a parent, I understand their desperation , and like to think I would have the courage to of let the lad go sooner, but if someone had given me a flicker of hope as in these circumstances....
Blue Cat said:
Actually I rather admire GOSH for doing this, everything they are doing is for, what they consider, in the best interest of the child, even allowing their reputation to be damaged.
I have read the court transcripts and they tried so hard to meet the parent's wishes. The judge even questioned the US Doctor who the phone about his treatment and it is clear by his answers, that there is no proof that this treatment will help and the Dr just wants to try, to see what it will do. The Judge didn't quite call him a liar, but reading between the lines i don't think he was impressed
They are also very clear that they believe the child is suffering and the fact they haven't said 'stuff it take the kid'in the face of all the hate is admirable.
I agree. I have huge respect for the caring resilient way they've conducted themselves, as well as the way the courts and justice system have. I have read the court transcripts and they tried so hard to meet the parent's wishes. The judge even questioned the US Doctor who the phone about his treatment and it is clear by his answers, that there is no proof that this treatment will help and the Dr just wants to try, to see what it will do. The Judge didn't quite call him a liar, but reading between the lines i don't think he was impressed
They are also very clear that they believe the child is suffering and the fact they haven't said 'stuff it take the kid'in the face of all the hate is admirable.
Blue Cat said:
Actually I rather admire GOSH for doing this, everything they are doing is for, what they consider, in the best interest of the child, even allowing their reputation to be damaged.
I have read the court transcripts and they tried so hard to meet the parent's wishes. The judge even questioned the US Doctor who the phone about his treatment and it is clear by his answers, that there is no proof that this treatment will help and the Dr just wants to try, to see what it will do. The Judge didn't quite call him a liar, but reading between the lines i don't think he was impressed
They are also very clear that they believe the child is suffering and the fact they haven't said 'stuff it take the kid'in the face of all the hate is admirable
Sure it's admirable. But, if we believe what we are told about the state of the NHS, there are other people who are literally dying as a result of the money being spent on such a crusade. I have the same view about people who want to top themselves due to disease. Rather than fighting them with funds that could be spent on people who actually want to live, they should be allowed to get on with it. I have read the court transcripts and they tried so hard to meet the parent's wishes. The judge even questioned the US Doctor who the phone about his treatment and it is clear by his answers, that there is no proof that this treatment will help and the Dr just wants to try, to see what it will do. The Judge didn't quite call him a liar, but reading between the lines i don't think he was impressed
They are also very clear that they believe the child is suffering and the fact they haven't said 'stuff it take the kid'in the face of all the hate is admirable
rxe said:
Sure it's admirable. But, if we believe what we are told about the state of the NHS, there are other people who are literally dying as a result of the money being spent on such a crusade. I have the same view about people who want to top themselves due to disease. Rather than fighting them with funds that could be spent on people who actually want to live, they should be allowed to get on with it.
It's not the parents own treatment though. Great Ormond street are standing up for the rights of the kid. By letting the parents get on with it, they would be allowing the kids suffering to be extended. Blue Cat said:
b
hstewie said:
hstewie said: It's just an awful situation where everyone feels they're acting in the best interests of Charlie.
The one thing that did surprise me, and I must say my initial reaction was that it felt wrong, was that apparently they aren't allowed to take him home to die once life support is with withdrawn.
If ever there was a damned if you do damned if you don't, imaging having to decide who's "right".
Yes I feel that same way but then logical brain kicked in and as soon as they take him off life support, he will die, he can't breathe without help, So just to get him home with all his equipment just to switch it off is a risk plus in hospital there is a better chance of making it painless or giving help if there is problem.The one thing that did surprise me, and I must say my initial reaction was that it felt wrong, was that apparently they aren't allowed to take him home to die once life support is with withdrawn.
If ever there was a damned if you do damned if you don't, imaging having to decide who's "right".
[b]Sadly it is an reflection on life today where facts matter less than emotional demands.[b] Charlie is going to die and unless there is a God or a Fairy Godmother nothing in the world is going to change that fact
The thrust of of the issue seems to be " the parents have a RIGHT" to decide what they want and to get it regardless of anything.
Having read bits of the High Court judgement earlier today it just seems even more sad; this child is absolutely NOT going to live very much longer, despite what anyone claims. He is severely brain damaged which all concerned agree can never be reversed. All the doctors who gave evidence to the court agree that any treatment given intended to 'cure' the disease would be futile (the Court even defined the word as meaning basically zero-chance of success) and even the US doctor - read border-line Snake Oil salesman - who wanted to try it agreed that any chance of success was vanishingly small and would In any event not improve his current situation to any measurable degree. I don't think that anyone would rationally argue that he would be pushing to administer this treatment if it weren't being paid for!
It just seems like this is a crusade to allow a parent to do what they think is best for them and not their child which is pretty sickening, quite honestly.
Eddieslofart said:
Tankrizzo said:
Thanks for the detailed explanation Wiccan, fills in a few gaps from the published stories.
Seconded. As further posts. As a parent, I understand their desperation , and like to think I would have the courage to of let the lad go sooner, but if someone had given me a flicker of hope as in these circumstances....
If the proposed 'treatment' were to take him on a pilgrimage to Lourdes in the hope of a miracle then the Courts would rightly slap it down and we wouldn't have a campaign to raise a million quid for the trip. What the US doctor proposes is essentially the same thing. This child has a condition from which it will die and there is no getting away from the fact.
I appreciate that rationalising stuff like that probably isn't too easy if it's your child who is going to die but it still doesn't translate into real hope.
American Hospital offering to send experimental drugs to the hospital. No guarantee they will work but good on them for the offer, even if, to me, it's misguided. No mention of any cost for these.
Thing is, even if these drugs extend Charlie's life, what sort of existence can he have. Blind, Deaf, can't breathe without a machine!! The Mother claims he's not in discomfort, how can she guarantee that 100% when he can't express himself in any way? Not having a 'nasty' go at the mother, any mother's instinct is to protect, but surely at some point she has to 'Let Him Go'
I know I wouldn't want to live a life in darkness and silence with no way to express myself!!
It's incredibly sad but Trump, The Pope et al are giving false hope when there needs to be a reality check!
Thing is, even if these drugs extend Charlie's life, what sort of existence can he have. Blind, Deaf, can't breathe without a machine!! The Mother claims he's not in discomfort, how can she guarantee that 100% when he can't express himself in any way? Not having a 'nasty' go at the mother, any mother's instinct is to protect, but surely at some point she has to 'Let Him Go'
I know I wouldn't want to live a life in darkness and silence with no way to express myself!!
It's incredibly sad but Trump, The Pope et al are giving false hope when there needs to be a reality check!
Daily Mail is really interesting with this - 99% of the comments on their website say "let the kid go" - yet they are pushing the story way ahead of anything else. Really odd as to what they see their objective as - their readers think much like PH (no surprise there!) so why keep going.....and using terms such as "bravely fighting" and "healthy and strong" to describe the american kids who spend/spent their lives in a state where none of us would want to be.....it just results in their readers leaping all over that stuff and ripping it apart.
I wonder if the mail have realised they dont have to get their readers angry and be on their side......they just need them angry!
I wonder if the mail have realised they dont have to get their readers angry and be on their side......they just need them angry!
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