Charlie Gard

[poo at Paul's]

A sad case as always when a young kid is involved, but I a troubled by this case for several reasons.

What is the view of others? This child has no realistic chance does he? Should he not have been allowed to slip away with some dignity long ago?

It's very difficult to imagine what the parents must be going through, but I cant help but think this has been prolonged more than it should have.


Poor lad.

[Roofless Toothless]

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?

[Zoon]

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?

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

[poo at Paul's]

But is there a realistic chance of recovery? To any quality of life for this little lad? Has he not suffered severe brain damage?

[Blue Cat]

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?

Actually the US Doctors are now saying that the experimental treatment will not help and that they were misled by the parents as to how bad the baby was.

It seems that the parents are just so desperate for a miracle, that they are grasping at anything.
UK Doctors feel the child is suffering and has no hope that is why they made the decision, i know who I believe

For more information
http://www.gosh.nhs.uk/frequently-asked-questions-...

Edited by Blue Cat on Monday 3rd July 17:24

[BlackLabel]

The Pope and the POTUS involving themselves is making things worse imo. The Judges at the European Court of Human Rights concluded, after seeing all the evidence, that further treatment would "continue to cause Charlie significant harm". The High Court and then the Supreme Court over here said the same.

[Roofless Toothless]

Actually, I didn't mean my post to sound quite so cynical. I shot from the hip a bit on that one - something I try not to do.

I'll settle for sceptical.

I think many of us are accustomed to believe that if anything is expensive it has to be better than something you get more cheaply. Who knows if that has played a part in the story? Easy then to spin this as NHS cost controlled decision making. That may have been so with Aysha King, who is now in recovery and attending school. I believe proton beam therapy has been made available in the UK now, possibly as the result of that case. I have no medical knowledge, but it seems that the two cases are very different.

I heard the parents interviewed on BBC radio. They sounded in a very bad place. None of us should ever be in their position, but I think they should listen to their doctors.

[Robertj21a]

poo at Paul's said:

A sad case as always when a young kid is involved, but I a troubled by this case for several reasons.

What is the view of others? This child has no realistic chance does he? Should he not have been allowed to slip away with some dignity long ago?

It's very difficult to imagine what the parents must be going through, but I cant help but think this has been prolonged more than it should have.


Poor lad.

Quite agree. Sorry to say it but the little chap should have been allowed to drift away some time ago.

[Wiccan of Darkness]

Oh this case. The child has no chance whatsoever. There's a lot in the media with people comparing this to the kid who went to Prague. There's no comparison, the Prague kid had cancer, Charlie Gard has a mild form of mitochondrial disease. I say "mild" as normally embryo's abort by the 12 week stage, the fact he was born alive is astounding.

I can offer a great deal of insight to this. I'll use bullet points to make it simplistic, as most people won't understand the complexities.

• Mitochondria are the power source for the cell. They produce energy in the form of ATP
• Charlie Gard has "mitochondrial disease" which is a broad spectrum. Bit like "cancer" - loads of different forms.
• Charlie has damaged DNA, the DNA in the mitochondria that codes for an enzyme known as a transcriptase. Every cell in his body has identical DNA, every mitochondria will have the damage.

• Transcriptase enzymes facilitate the reading of the DNA
• A gene is a section of DNA that codes for a specific protein. Without the transcriptase enzyme, those proteins cannot be made.
• In the mitochondria, all the energy is created within the cristae matrix, and the mitochondria is full of proteins involved in respiration. The proteins are called cytochromes and are enzymes.

* During respiration, these proteins convert energy in to ATP, they do this by creating an electrical potential across the mitochondrial membrane using hydrogen ions.

• The process of respiration takes its toll on these proteins. They get damaged. In normal cells, the mitochondrial DNA keeps replicating, and the proteins are constantly replaced.

• With Charlie, the damaged DNA in the mitochondria does not produce the transcriptase required. So as each respiratory protein is damaged, it is not replaced. The requirement for ATP remains the same. But the supply is diminished. It happens to people a lot, the best example is when you get cramp after exercise. Think how painful leg cramps can be. That's what Charlie feels. Unless his nerves are shot, then he won't feel that pain.

• This is fatal. It is terminal. There is no treatment. There is no cure. Well, there is. The mitochondrial DNA can be repaired. It would mean taking cells from charlie, removing the duff gene and replacing it with healthy DNA. Then hoping that over time, affected cells die off and are replaced with healthy cells. That's easy enough when the embryo is 8 or 16 cells in size, but Charlie is a baby and will consist of billions of cells. Plus doing such a treatment does have the tendancy to damage the DNA present, which results in premature death. So in short, the only possible treatment will be fatal anyway. And is futile, it won't reverse the situation.

The court were right in the decision to deny treatment in America. Charlie's parents had raised £1m for 'pioneering' treatment which is snake oil. That treatment wouldn't be offered if the parents didn't have the money. FWIW that £1m would last about 3 weeks and there'd be no improvement. The courts have a duty to protect everyone in this case, and in that instance, the courts protected the parents from snake oil salesmen.

Discuss this amongst yourselves but if anyone wants/needs technical information to aid with an argument, statement or a position then I'll happily oblige. But this is a ghastly case of medicine playing God and a (possibly) sentient being suffering as a result.

[poo at Paul's]

Blue Cat said:

Actually the US Doctors are now saying that the experimental treatment will not help and that they were misled by the parents as to how bad the baby was.

It seems that the parents are just so desperate for a miracle, that they are grasping at anything.
UK Doctors feel the child is suffering and has no hope that is why they made the decision, i know who I believe

For more information
http://www.gosh.nhs.uk/frequently-asked-questions-...

Edited by Blue Cat on Monday 3rd July 17:24

This is the bit that worries me also. Huge sums of money raised, but was their any realistic hope of him receiving useful treatment? If not, how should those who contributed feel?

[jjlynn27]

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

Not similar at all.

[kev1974]

I lost sympathy for the parents when they started publicly laying into the Great Ormond Street doctors,

[Short Grain]

poo at Paul's said:

Blue Cat said:

Actually the US Doctors are now saying that the experimental treatment will not help and that they were misled by the parents as to how bad the baby was.

It seems that the parents are just so desperate for a miracle, that they are grasping at anything.
UK Doctors feel the child is suffering and has no hope that is why they made the decision, i know who I believe

For more information
http://www.gosh.nhs.uk/frequently-asked-questions-...

Edited by Blue Cat on Monday 3rd July 17:24

This is the bit that worries me also. Huge sums of money raised, but was their any realistic hope of him receiving useful treatment? If not, how should those who contributed feel?

Think the Parents have stated that any monies raised will go to a charity for research into Mitochondrial Disease, but is there really any real prospect of finding a cure if most foetus abort. Can this be detected in the womb and be sort of 'reverse engineered'?
Harsh I know, but would that money just be wasted?

[bitchstewie]

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".

[Blue Cat]

bhstewie 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.

Sadly it is an reflection on life today where facts matter less than emotional demands. 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

[hairykrishna]

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

The doctors did not say Ashya King had no chance. What they said was, in his particular case, proton therapy had no significant advantage over the advanced conventional radiotherapy that he would get in this country. Given that he was very ill transporting him to the US or across Europe introduced risks that treating him here didn't and would introduce a further delay to his treatment. They therefore thought that he should get treated here.

Luckily Ashya seems to be ok. Cancer treatment is an odds game. In the view of lots of senior oncologists he would have had slightly better odds if he'd followed the conventional route.

[BlackLabel]

poo at Paul's said:

This is the bit that worries me also. Huge sums of money raised, but was their any realistic hope of him receiving useful treatment? If not, how should those who contributed feel?

Re the money raised I hope they give it to Great Ormond Street but given the relations between the parents and the hospital that might be unrealistic. The parents themselves have said they'll set up some kind of charity.

bbc said:

"A few people have asked us what we'll do if we don't win the court case," Ms Yates said in a statement posted on the GoFundMe website used to fundraise for his treatment.
"We'd like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.
"If Charlie doesn't get this chance, we will make sure that other innocent babies and children will be saved", she said.
The post has since been deleted and GoFundMe said it would discuss with Charlie's parents what should happen to the monies raised.

http://www.bbc.co.uk/news/uk-england-london-40430188

[poo at Paul's]

BlackLabel said:

poo at Paul's said:

This is the bit that worries me also. Huge sums of money raised, but was their any realistic hope of him receiving useful treatment? If not, how should those who contributed feel?

Re the money raised I hope they give it to Great Ormond Street but given the relations between the parents and the hospital that might be unrealistic. The parents themselves have said they'll set up some kind of charity.

bbc said:

"A few people have asked us what we'll do if we don't win the court case," Ms Yates said in a statement posted on the GoFundMe website used to fundraise for his treatment.
"We'd like to save other babies and children because these medications have been proven to work and we honestly have so much belief in them.
"If Charlie doesn't get this chance, we will make sure that other innocent babies and children will be saved", she said.
The post has since been deleted and GoFundMe said it would discuss with Charlie's parents what should happen to the monies raised.

http://www.bbc.co.uk/news/uk-england-london-40430188

May they even give it back? Parents running charities with millions of quid in them sits rather uneasy with me.

[Tankrizzo]

Thanks for the detailed explanation Wiccan, fills in a few gaps from the published stories.

[Wiccan of Darkness]

Tankrizzo said:

Thanks for the detailed explanation Wiccan, fills in a few gaps from the published stories.

No probs. I'm in a position where I fully understand the condition (it's complex, hence why the media have so far got it hideously wrong) plus able to explain it to a layperson. Does help that it's my job to do just that.

I cannot see what this 'treatment' that the BBC have said actually is, considering the only treatment/cure is to successfully replicate the DNA in new cells that does not carry the fault.

My professional opinion is pretty clear cut. There was never any chance of the child living, not with the specific type of mitochondrial disease he had. Transcriptase impairment has one of three outcomes, that is blastula failure, foetal abortion and infant death.

It's worth noting that conception is extremely common. During the bit where the egg genes and the sperm genes meet, the DNA is often fatally damaged. Since 50% of our genes (about 12,000) are required for life itself, another 6000 genes for being organisms with more than 1 cell, 4000 genes because we're animals and not plants, and 2000 genes to make us human and not nematodes then there's a chance that the DNA that gets corrupted is for something important.

When that happens, we have a specific gene for programmable self destruct. It's perfectly normal and useful during gestation as during development, some cells have to be destroyed. Occasionally that fails to happen, and a good example is people with webbed feet.

But the point is, if there's anything fundamentally wrong with the genes post fertilisation, the embryo will naturally abort. This happens more often than people think, or realise.

Nearly every copulation will result in fertilisation. 95% of these, will fail and the resulting ball of cells is naturally aborted at the next menstrual cycle. Mitochondrial disorders such as Charlies, are one such reason for early gestational termination.

The science and technology exists to screen for this condition, and treat it in vitro. The question is at what point do we as a society expect a free healthcare system to intervene, and at what point do we say no to a treatment.