Charlie Gard has passed

[flacaltenn]

But what happens when parents are wrong?

I told you how that works. When it's discovered, it is PROSECUTED. And THEN the State steps in. You don't design a system that ASSUMES EVERY PARENT is cruel and unreasonable or stupid. UNLESS -- your political leanings just ASSUME that you and your clan are BRIGHTER, and MORE COMPASSIONATE, and WISER than most of us..

 

[Coyote]

But what happens when parents are wrong?

I told you how that works. When it's discovered, it is PROSECUTED. And THEN the State steps in. You don't design a system that ASSUMES EVERY PARENT is cruel and unreasonable or stupid. UNLESS -- your political leanings just ASSUME that you and your clan are BRIGHTER, and MORE COMPASSIONATE, and WISER than most of us..

It's not about clans. Quit on that!

Ok...when it's discovered, it's prosecuted. And the child might already be dead.

No one is talking about a system that assumes every parent is cruel etc - THAT is a STRAWMAN.

But you need something between a dead child and parental rights don't you think?

 

[flacaltenn]

WHO should make decisions? It sounds like you are saying it should always be the parents. In that case - what about the articles I cited? It's not even right vs left. POLITICIANS are turning it into right/left arguments. It isn't - it's an ethics argument, with the parents on one side and the medical community on the other and the child in the middle. It NEVER WAS a POLITICAL argument until AMERICAN partisans got into it.

This has EVERYTHING to do with tribal warfare. Pitting ONE SIDE that reflexively gives that Power to the State in ALL CASES --- against the other side who reserves the elements of Liberty Freedom and CHOICE to sovereign individuals. The way that classic Liberals wanted it to be. Leftists have the fear of concentrated power bred right out of their souls. Because of the arrogance of believing that THEY are wiser, more compassionate and wiser than the rest of us. This is NOT the classic Liberal attitude where a fear of the STATE becoming your Nanny was real thing. Ask Thoreau -- he'll tell you...

And this case demonstrates what can happen in a country where parents are STRIPPED of all Guardianship rights and have to BEG and PLEAD for EVERY concession.. Is that REALLY what you intend? Because that is apparently the case NOW in the UK. Thank Gawd that in the in the US any proposed law that would A PRIORY strip parental guardianship would be unconstitutional.

Leaving YOUR CLAN to decide -- child abuse would soon extend to the PopTarts at breakfast and the Sunday School requirement. While making it hunky-dory to take your 10 yr old to a Gay Pride parade for the humping, wagging wieners, and bouncy tits.

 

[Coyote]

WHO should make decisions? It sounds like you are saying it should always be the parents. In that case - what about the articles I cited? It's not even right vs left. POLITICIANS are turning it into right/left arguments. It isn't - it's an ethics argument, with the parents on one side and the medical community on the other and the child in the middle. It NEVER WAS a POLITICAL argument until AMERICAN partisans got into it.

This has EVERYTHING to do with tribal warfare. Pitting ONE SIDE that reflexively gives that Power to the State in ALL CASES --- against the other side who reserves the elements of Liberty Freedom and CHOICE to sovereign individuals. The way that classic Liberals wanted it to be. Leftists have the fear of concentrated power bred right out of their souls. Because of the arrogance of believing that THEY are wiser, more compassionate and wiser than the rest of us. This is NOT the classic Liberal attitude where a fear of the STATE becoming your Nanny was real thing. Ask Thoreau -- he'll tell you...

And this case demonstrates what can happen in a country where parents are STRIPPED of all Guardianship rights and have to BEG and PLEAD for EVERY concession.. Is that REALLY what you intend? Because that is apparently the case NOW in the UK. Thank Gawd that in the in the US any proposed law that would A PRIORY strip parental guardianship would be unconstitutional.

Leaving YOUR CLAN to decide -- child abuse would soon extend to the PopTarts at breakfast and the Sunday School requirement. While making it hunky-dory to take your 10 yr old to a Gay Pride parade for the humping, wagging wieners, and bouncy tits.

For heaven's sakes - you are totally exagerating. It's not about effing clans.

NO ONE is talking about stripping parents of ALL guardianship rights either.

Let me know when you want to talk about what ACTUALLY is happening. Otherwise I'm done.

 

[flacaltenn]

That is where you are wrong. Mitochondrial diseases are not one disease, they are a collection of diseases with different mutations involved and they run the gamut from extremely severe (Charlie) to less severe. Charlie's was determined to be one of the most severe. The other child who was helped had a DIFFERENT mutation.

I've told you six times,, now seven. The ONLY WAY you determine if you can attach "your cure" to mutated gene is to have the patient in YOUR FACILITY for testing. Can't do that by flying over to lay a stethoscope on the child. The answer is a simple yes/no. Because it's RESEARCH and it's custom to EVERY patient. There is a reasonable that if you can "find the hooks" in that particular patient's DNA to DELIVER THE CURE -- that it will work the same way for a large VARIETY of mutations involved. That's the science and I'm somewhat familar with the ways that OTHER cures are customized for MYRIADS of mutations of the same general disease.

That's WHY it's not ready for prime time. And that is what NHS is scared to DEATH about having the public demand. But we won't GET THERE --- until the research progresses. And NHS isn't favorable to having SOME folks be able to avail themselves to this research.

Are we CLEAR NOW? Do you understand WHY Charlie HAD to go to the US for evaluation?

 

[Coyote]

That is where you are wrong. Mitochondrial diseases are not one disease, they are a collection of diseases with different mutations involved and they run the gamut from extremely severe (Charlie) to less severe. Charlie's was determined to be one of the most severe. The other child who was helped had a DIFFERENT mutation.

I've told you six times,, now seven. The ONLY WAY you determine if you can attach "your cure" to mutated gene is to have the patient in YOUR FACILITY for testing. Can't do that by flying over to lay a stethoscope on the child. The answer is a simple yes/no. Because it's RESEARCH and it's custom to EVERY patient. There is a reasonable that if you can "find the hooks" in that particular patient's DNA to DELIVER THE CURE -- that it will work the same way for a large VARIETY of mutations involved. That's the science and I'm somewhat familar with the ways that OTHER cures are customized for MYRIADS of mutations of the same general disease.

That's WHY it's not ready for prime time. And that is what NHS is scared to DEATH about having the public demand. But we won't GET THERE --- until the research progresses. And NHS isn't favorable to having SOME folks be able to avail themselves to this research.

Are we CLEAR NOW? Do you understand WHY Charlie HAD to go to the US for evaluation?

The NHS has no problem with utilizing research. In fact they are no different then AMERICAN INSURANCE COMPANIES in that regard - and people can go outside of the system if they have the money. THIS ISN'T ABOUT NHS.

This particular research WASN'T and WOULDN'T be tailored to Charlie's mutation - it was tailored to another mutatio. There was no talk - none - about making it specific to Charlie. It was using what was used for the other patients and we only know the result of ONE of those.

 

[flacaltenn]

And you are talking about having a terminally ill child on life support making a transatlantic flight.

You are right - we and the world have no right to be arguing over it - it's between his parents, the doctors and the UK courts.

This is all standard practice. Done all the time. There are special airlifts for patients who are completely on life support. NOT an issue. There IS a risk. But it's an acceptable one. AND -- with the publicity of this case -- almost CERTAINLY, some individual or Org would have sponsored the flight. And the return flight if necessary. Trump himself would have sent a Military Air Ambulance flight. That would further infuriate you --- wouldn't it?

Shouldn't be a case of BEGGING THE COURT for permission to treat.. THe issue was this treatment was able to be denied -- even tho -- it's valid science, it gave the kid a chance and NHS had already decided to kill him..

Should be between the PARENTS and the doctors -- period. It's NOWHERE NEAR "child abuse". It's as far from that as you can get. It's unbounded LOVE and COMMITMENT..

 

[Coyote]

And NO. Charlie did not have to go to the US for an EVALUATION. He was already at a top rate facility.

 

[flacaltenn]

WHO should make decisions? It sounds like you are saying it should always be the parents. In that case - what about the articles I cited? It's not even right vs left. POLITICIANS are turning it into right/left arguments. It isn't - it's an ethics argument, with the parents on one side and the medical community on the other and the child in the middle. It NEVER WAS a POLITICAL argument until AMERICAN partisans got into it.

This has EVERYTHING to do with tribal warfare. Pitting ONE SIDE that reflexively gives that Power to the State in ALL CASES --- against the other side who reserves the elements of Liberty Freedom and CHOICE to sovereign individuals. The way that classic Liberals wanted it to be. Leftists have the fear of concentrated power bred right out of their souls. Because of the arrogance of believing that THEY are wiser, more compassionate and wiser than the rest of us. This is NOT the classic Liberal attitude where a fear of the STATE becoming your Nanny was real thing. Ask Thoreau -- he'll tell you...

And this case demonstrates what can happen in a country where parents are STRIPPED of all Guardianship rights and have to BEG and PLEAD for EVERY concession.. Is that REALLY what you intend? Because that is apparently the case NOW in the UK. Thank Gawd that in the in the US any proposed law that would A PRIORY strip parental guardianship would be unconstitutional.

Leaving YOUR CLAN to decide -- child abuse would soon extend to the PopTarts at breakfast and the Sunday School requirement. While making it hunky-dory to take your 10 yr old to a Gay Pride parade for the humping, wagging wieners, and bouncy tits.

For heaven's sakes - you are totally exagerating. It's not about effing clans.

NO ONE is talking about stripping parents of ALL guardianship rights either.

Let me know when you want to talk about what ACTUALLY is happening. Otherwise I'm done.

That's what happened in this case. Because of the perverse laws in the UK. Parents are not even considered Guardians for juvenile legal proceedings there (apparently). And certainly, they are stripped of parental Guardianship in choice of Doctors and venues of treatment by the socialized health system.

 

[Coyote]

And you are talking about having a terminally ill child on life support making a transatlantic flight.

You are right - we and the world have no right to be arguing over it - it's between his parents, the doctors and the UK courts.

This is all standard practice. Done all the time. There are special airlifts for patients who are completely on life support. NOT an issue. There IS a risk. But it's an acceptable one. AND -- with the publicity of this case -- almost CERTAINLY, some individual or Org would have sponsored the flight. And the return flight if necessary. Trump himself would have sent a Military Air Ambulance flight. That would further infuriate you --- wouldn't it?

Shouldn't be a case of BEGGING THE COURT for permission to treat.. THe issue was this treatment was able to be denied -- even tho -- it's valid science, it gave the kid a chance and NHS had already decided to kill him..

Should be between the PARENTS and the doctors -- period. It's NOWHERE NEAR "child abuse". It's as far from that as you can get. It's unbounded LOVE and COMMITMENT..

Bullshit.

It's not "valid science" yet - it's so experimental it's not even in clinical trials. In the US you have to get legal permission to try something so experimental on a patient but go ahead and blame it on NHS as if it were different. It's not. They didn't "decide to kill him" - he was severely brain damaged, had organ damage and was kept alive only on life support.

But hey - keep cheering on Trump if that is what you wish to make it about effing politics instead of medical ethics.

 

[Coyote]

WHO should make decisions? It sounds like you are saying it should always be the parents. In that case - what about the articles I cited? It's not even right vs left. POLITICIANS are turning it into right/left arguments. It isn't - it's an ethics argument, with the parents on one side and the medical community on the other and the child in the middle. It NEVER WAS a POLITICAL argument until AMERICAN partisans got into it.

This has EVERYTHING to do with tribal warfare. Pitting ONE SIDE that reflexively gives that Power to the State in ALL CASES --- against the other side who reserves the elements of Liberty Freedom and CHOICE to sovereign individuals. The way that classic Liberals wanted it to be. Leftists have the fear of concentrated power bred right out of their souls. Because of the arrogance of believing that THEY are wiser, more compassionate and wiser than the rest of us. This is NOT the classic Liberal attitude where a fear of the STATE becoming your Nanny was real thing. Ask Thoreau -- he'll tell you...

And this case demonstrates what can happen in a country where parents are STRIPPED of all Guardianship rights and have to BEG and PLEAD for EVERY concession.. Is that REALLY what you intend? Because that is apparently the case NOW in the UK. Thank Gawd that in the in the US any proposed law that would A PRIORY strip parental guardianship would be unconstitutional.

Leaving YOUR CLAN to decide -- child abuse would soon extend to the PopTarts at breakfast and the Sunday School requirement. While making it hunky-dory to take your 10 yr old to a Gay Pride parade for the humping, wagging wieners, and bouncy tits.

For heaven's sakes - you are totally exagerating. It's not about effing clans.

NO ONE is talking about stripping parents of ALL guardianship rights either.

Let me know when you want to talk about what ACTUALLY is happening. Otherwise I'm done.

That's what happened in this case. Because of the perverse laws in the UK. Parents are not even considered Guardians for juvenile legal proceedings there (apparently). And certainly, they are stripped of parental Guardianship in choice of Doctors and venues of treatment by the socialized health system.

Right. Just like religious nuts are allowed their rights because they want "treat" their cancer stricken children with "prayer" instead of "conventional" medical treatment because of perverse laws in the US.

 

[flacaltenn]

And NO. Charlie did not have to go to the US for an EVALUATION. He was already at a top rate facility.

You don't understand the science then of what these researchers are doing. It takes about 10 skilled people and a lot of SPECIALIZED equipment to determine how to attack any mutational variation of the illness you are trying to cure. Just 10 minutes more or less "bake time" in ONE STEP of the process -- ruins the evaluation. That's WHY it's so specialized.

That's WHY -- this type of procedure needs to have the patient IN the facility. You can deny that all you want. But that's how it works.

 

[flacaltenn]

WHO should make decisions? It sounds like you are saying it should always be the parents. In that case - what about the articles I cited? It's not even right vs left. POLITICIANS are turning it into right/left arguments. It isn't - it's an ethics argument, with the parents on one side and the medical community on the other and the child in the middle. It NEVER WAS a POLITICAL argument until AMERICAN partisans got into it.

This has EVERYTHING to do with tribal warfare. Pitting ONE SIDE that reflexively gives that Power to the State in ALL CASES --- against the other side who reserves the elements of Liberty Freedom and CHOICE to sovereign individuals. The way that classic Liberals wanted it to be. Leftists have the fear of concentrated power bred right out of their souls. Because of the arrogance of believing that THEY are wiser, more compassionate and wiser than the rest of us. This is NOT the classic Liberal attitude where a fear of the STATE becoming your Nanny was real thing. Ask Thoreau -- he'll tell you...

And this case demonstrates what can happen in a country where parents are STRIPPED of all Guardianship rights and have to BEG and PLEAD for EVERY concession.. Is that REALLY what you intend? Because that is apparently the case NOW in the UK. Thank Gawd that in the in the US any proposed law that would A PRIORY strip parental guardianship would be unconstitutional.

Leaving YOUR CLAN to decide -- child abuse would soon extend to the PopTarts at breakfast and the Sunday School requirement. While making it hunky-dory to take your 10 yr old to a Gay Pride parade for the humping, wagging wieners, and bouncy tits.

For heaven's sakes - you are totally exagerating. It's not about effing clans.

NO ONE is talking about stripping parents of ALL guardianship rights either.

Let me know when you want to talk about what ACTUALLY is happening. Otherwise I'm done.

That's what happened in this case. Because of the perverse laws in the UK. Parents are not even considered Guardians for juvenile legal proceedings there (apparently). And certainly, they are stripped of parental Guardianship in choice of Doctors and venues of treatment by the socialized health system.

Right. Just like religious nuts are allowed their rights because they want "treat" their cancer stricken children with "prayer" instead of "conventional" medical treatment because of perverse laws in the US.

A lot of ADULTS treat themselves with prayer in cancer cases. ESPECIALLY for protocols with low chances of success and near lethal doses. That's a personal choice. Has nothing to do with being "blinded by the light".

 

[Coyote]

And NO. Charlie did not have to go to the US for an EVALUATION. He was already at a top rate facility.

You don't understand the science then of what these researchers are doing. It takes about 10 skilled people and a lot of SPECIALIZED equipment to determine how to attack any mutational variation of the illness you are trying to cure. Just 10 minutes more or less "bake time" in ONE STEP of the process -- ruins the evaluation. That's WHY it's so specialized.

That's WHY -- this type of procedure needs to have the patient IN the facility. You can deny that all you want. But that's how it works.

It is so specialized that his treatment is DESIGNED to treat ONE SPECIFIC MUTATION only - he's not developed any other and THAT is what he was going to use. He wasn't developing another one.

 

[Coyote]

WHO should make decisions? It sounds like you are saying it should always be the parents. In that case - what about the articles I cited? It's not even right vs left. POLITICIANS are turning it into right/left arguments. It isn't - it's an ethics argument, with the parents on one side and the medical community on the other and the child in the middle. It NEVER WAS a POLITICAL argument until AMERICAN partisans got into it.

This has EVERYTHING to do with tribal warfare. Pitting ONE SIDE that reflexively gives that Power to the State in ALL CASES --- against the other side who reserves the elements of Liberty Freedom and CHOICE to sovereign individuals. The way that classic Liberals wanted it to be. Leftists have the fear of concentrated power bred right out of their souls. Because of the arrogance of believing that THEY are wiser, more compassionate and wiser than the rest of us. This is NOT the classic Liberal attitude where a fear of the STATE becoming your Nanny was real thing. Ask Thoreau -- he'll tell you...

And this case demonstrates what can happen in a country where parents are STRIPPED of all Guardianship rights and have to BEG and PLEAD for EVERY concession.. Is that REALLY what you intend? Because that is apparently the case NOW in the UK. Thank Gawd that in the in the US any proposed law that would A PRIORY strip parental guardianship would be unconstitutional.

Leaving YOUR CLAN to decide -- child abuse would soon extend to the PopTarts at breakfast and the Sunday School requirement. While making it hunky-dory to take your 10 yr old to a Gay Pride parade for the humping, wagging wieners, and bouncy tits.

For heaven's sakes - you are totally exagerating. It's not about effing clans.

NO ONE is talking about stripping parents of ALL guardianship rights either.

Let me know when you want to talk about what ACTUALLY is happening. Otherwise I'm done.

That's what happened in this case. Because of the perverse laws in the UK. Parents are not even considered Guardians for juvenile legal proceedings there (apparently). And certainly, they are stripped of parental Guardianship in choice of Doctors and venues of treatment by the socialized health system.

Right. Just like religious nuts are allowed their rights because they want "treat" their cancer stricken children with "prayer" instead of "conventional" medical treatment because of perverse laws in the US.

A lot of ADULTS treat themselves with prayer in cancer cases. ESPECIALLY for protocols with low chances of success and near lethal doses. That's a personal choice. Has nothing to do with being "blinded by the light".

There is a difference between treating themselves and making that choice for a child.

Just like it has nothing to do with being "blinded by the light"...neither do medical choices made for Charlie have to do with being "blinded by politics".

 

[flacaltenn]

Evidently NOT. Because Charlie's parents RAISED the money and would have gotten LOTS of help on Life Flights and things like that. So OBVIOUSLY, even with the MONEY -- the State OWNED that child. That's the outrage. Evidently -- you're immune from obvious and want to defend the indefensible any way that you can..

No, I'm not defending the indefensible.

You're trying to make this something it's not.

Parents do not OWN a child either.
.

Yeah we do. You on the left are under the impression they belong to society....you couldn't be more wrong.

Keep your paws off of them, cease your indoctrinatin of them, stop with sexulation of them with this gay, trans, etc. BS.

You want a war? That's a damn good way to get one. I know plenty of parents...we're weary of you people.

The parents of Charlie Gard AND Charlie Gard were wronged.

That's a fact

I don't want a fight with you Sassy.

But what happens when parents are wrong?


btw...sexualization of children? Maybe you should look at those child pagents.

That too is "you people".

Oh good grief, yeah we're teaching them gay and trans shit in preschool.

Keep your paws off of them.

There is a saying, the most dangerous place in the world...between a mother and her childten.

Heed it. I live it

And what about child pagents? Photographers who SEXUALIZE children? I'm more worried about that then I am about gay and trans stuff.

Isn't there something TERRIBLY wrong with this? But it's MAINSTREAM!

It's a concern. It's distastful to many. Me included. But TOLERANCE of things that irk you is the BASIS of a free country. Do a study. Find out if these kids are warped by it. Find out if the PARENTS are themselves crazy. If not -- don't worry about it.

If every dress up picture starts to be painted as "pervert bait" -- then we lose a lot of freedom.

Parents make their kids do a LOT of things -- sometimes more for the benefit of the parents. Like torturing kids with music lessons or insisting on playing sports. It's not ALL de facto child abuse.

 

[flacaltenn]

There is a difference between treating themselves and making that choice for a child.

It MIGHT be different in that a parent would err to SPARE the child the horrendous "therapy" of Chemo. Whereas they might consider it more of an option for an older relative. But it's the same process. And individuals shouldn't be FORCED into Chemotherapy or have their children FORCED into chemotherapy in all cases.

The idea of them dying INNOCENT and unaware of that torture --- might appeal in a lot of marginal cases. Isn't the State's call..

 

[flacaltenn]

My feelings are this.

As a society we are ALL responsible for the children in our society. We all contribute to pay for their education and welfare, and if their parents fail or fall, we all SHOULD be willing to do what is necessary to pick up the pieces and help them.

And as you know, I don't have children but that doesn't diminish my responsibility.

In the pictures you (Lucy) show above my feeling is this. Children should be taught to be COMPASSIONATE of all humanity. To not judge on outward appearances. Is that indoctrination?

On the other hand, parents should not sexualize children. Children are too young to make gender determinations and parents should NOT make them for them. They should be understanding, compassionate and STAND BY their children. If, after puberty, the child's choice is not his biological assignment, I hope the parents understand and love that child all the more. Is that to alien a concept?

On sexualizing children - LOOK AT BEAUTY PAGENTS - it's disgusting. Children masquerading as fully sexualized adults. It's so wrong. Let them be children. Don't force gender choices on them and don't turn them into sexual beings before they need to be

Agree fully. Just don't CRIMINALIZE those choices. Work to educate people of the side effects. ESPECIALLY about placing pre-puberty kids in trans therapy.

 

[flacaltenn]

And NO. Charlie did not have to go to the US for an EVALUATION. He was already at a top rate facility.

You don't understand the science then of what these researchers are doing. It takes about 10 skilled people and a lot of SPECIALIZED equipment to determine how to attack any mutational variation of the illness you are trying to cure. Just 10 minutes more or less "bake time" in ONE STEP of the process -- ruins the evaluation. That's WHY it's so specialized.

That's WHY -- this type of procedure needs to have the patient IN the facility. You can deny that all you want. But that's how it works.

It is so specialized that his treatment is DESIGNED to treat ONE SPECIFIC MUTATION only - he's not developed any other and THAT is what he was going to use. He wasn't developing another one.

No.. That's not true. That's what all this customized gene therapy is all about. You find a way to attack the general defect, but you have to customize the "delivery" and specific DNA patching for the patient. Sometimes you succeed, other times you don't. At least right now. Dr Hirano has saved 16 or 18 kids with various MUTATIONS of the same general defect. It's much like writing anti-virus code software. But in DNA chemistry. You've seen the GENERAL malware before, but you might have to change a couple lines of software code to kill THIS one. My daughter did this same song and dance working at one of the best pediatric neural disease research centers in America. Some processes were mature and covered a lot of patients. Other newer ones had to have a LOT of customization.

At SOME point -- you stop seeing a lot of mutations that are NEW to you. That's when you can shift gears and try to "generalize" the approach..

The customization part isn't evaluated or DESIGNED by flying to England.

 

[JoeB131]

EVIDENTLY children are property of the STATE in the UK. That's one Clinton "Village" I would FLEE from. Not only were Charlies parents not in the Guardian position with regards to his health care, but STATE APPARENTLY takes the Guardian position in any LEGAL trials.

Is THAT the "Village" -- you leftists want to create here? Good damn luck with that.

Uh, dude, that's the village most of us want. We certainly don't want parents who put their children in danger or prolong their suffering, like Jehovah's Witlesses not wanting their kids to get blood transfusions or snake handlers exposing their kids to poisonous snakes.

The question here was were they prolonging Charlie's suffering to have a hope of recovery (there was none) or were they prolonging it so the parents could feel better. Obviously the latter.

Again- in the "AMerican" village, a big insurance company would have cut off treatment and all you nutters wouldn't be sending money to the parents.