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Charlie Gard granted U.S Citizenship by congress

Charlie Gard granted U.S Citizenship by congress

Old Jul 20th 2017, 7:43 am
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Default Re: Charlie Gard granted U.S Citizenship by congress

Oh. I didn't see that about the reference to FREE heralthcare . Sorry Rete.

It isn't about gaining free healthcare. He already has the very best of the best free healthcare that there is on the planet.

It is about something else entirely and that something else is unsavoury on every level.


Link fundraising page for the parents .


Sad thing is , it will not save this wee babe's life at all. Although it could be used to help further research somehow.
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Old Jul 20th 2017, 11:08 am
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Default Re: Charlie Gard granted U.S Citizenship by congress

Originally Posted by BEVS


Link fundraising page for the parents .


Sad thing is , it will not save this wee babe's life at all. Although it could be used to help further research somehow.
That money is going to 'save Charlie'. If they can't get him to the US for this pointless treatment (imo) what happens to that money? If it's decided that his life support needs to be turned off (please for the sake of this baby) what happens to that money?
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Old Jul 20th 2017, 12:21 pm
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Default Re: Charlie Gard granted U.S Citizenship by congress

Practically - he cannot go anywhere without paediatric life support, nursing and consultant. Assuming he doesnt die en route simply moving him will cost 250-500k? How cruel is it to move him? Unsure? I am sure that GOSH go to the courts to get a dispassionate legal decision supported by their expert clinical knowledge, and in this i trust them. They have gone back to court also to cover their axxes which is required... Nobody working in that hospital wants anything but the best outcome for the child, it is his, not his parents interests they have a duty to maintain.

The childs parents have pr advisers, lawyers etc etc all paid for by i assume their collection of money for their child, which is all a little unsavory but understandable.

IMHO this child will not live as a vegetable much longer, but the longer he lives the more money will be collected, harsh but true.
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Old Jul 20th 2017, 12:28 pm
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Default Re: Charlie Gard granted U.S Citizenship by congress

Originally Posted by moneypenny20
That money is going to 'save Charlie'. If they can't get him to the US for this pointless treatment (imo) what happens to that money? If it's decided that his life support needs to be turned off (please for the sake of this baby) what happens to that money?
That's the problem with these GoFundMe things. Although they are set up to raise money for x cause or y person, if the person dies or the cause ceases to exist what happens? The mother was quoted as saying that if he can't have the treatment or if he dies before he can get here then the money will be used for research. But that's not why the people gave the money.

I see this being used as a political argument here to "prove" to people that nationalized healthcare doesn't work. A B visa would have been completely suitable - just the same as anyone else who has been brought here for treatment has been given - but they are making a song and dance over granting him PR to make a point.

Many of us have had to watch the life support system being switched off for a loved one. It's harrowing. I have had to say goodbye to a child. There's no worse feeling in the world. Whilst I do feel for the parents and applaud their determination, I'm confident that GOSH would have released him to the USA or the Vatican or wherever if there was any chance of improvement to his condition. The sad fact is he's only alive because a mechanical pump is forcing air into his lungs. I'm actually surprised his machine has been kept on as long as it has.
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Old Jul 20th 2017, 12:36 pm
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Default Re: Charlie Gard granted U.S Citizenship by congress

Originally Posted by uk_grenada
Practically - he cannot go anywhere without paediatric life support, nursing and consultant. Assuming he doesnt die en route simply moving him will cost 250-500k?
Indeed. Although the parents have raised over a million, which to the average Joe in the U.K. seems to be plenty of money for medical treatment, most people have no idea that £1 million doesn't go very far when we are talking about this level of care. A good chunk will be taken just getting him to the USA. He's not going to be on a BA plane - it will be a Med Jet. Just to take someone by air ambulance to a hospital 50 miles away costs over $10,000. To take a baby on life support with full medical team across the Atlantic will be astronomical.
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Old Jul 20th 2017, 2:07 pm
  #36  
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Default Re: Charlie Gard granted U.S Citizenship by congress

Originally Posted by moneypenny20
That money is going to 'save Charlie'. If they can't get him to the US for this pointless treatment (imo) what happens to that money? If it's decided that his life support needs to be turned off (please for the sake of this baby) what happens to that money?
The family state that the money will go to the research into Charlie's condition if it cannot be used for him personally.
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Old Jul 20th 2017, 2:14 pm
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Default Re: Charlie Gard granted U.S Citizenship by congress

Originally Posted by Twinkle0927
That's the problem with these GoFundMe things. Although they are set up to raise money for x cause or y person, if the person dies or the cause ceases to exist what happens? The mother was quoted as saying that if he can't have the treatment or if he dies before he can get here then the money will be used for research. But that's not why the people gave the money.

I see this being used as a political argument here to "prove" to people that nationalized healthcare doesn't work. A B visa would have been completely suitable - just the same as anyone else who has been brought here for treatment has been given - but they are making a song and dance over granting him PR to make a point.

Many of us have had to watch the life support system being switched off for a loved one. It's harrowing. I have had to say goodbye to a child. There's no worse feeling in the world. Whilst I do feel for the parents and applaud their determination, I'm confident that GOSH would have released him to the USA or the Vatican or wherever if there was any chance of improvement to his condition. The sad fact is he's only alive because a mechanical pump is forcing air into his lungs. I'm actually surprised his machine has been kept on as long as it has.
As you say, if GOSH could have found viable treatment options then they would have followed them up. The fact is that even the research that has been done into the condition has so far resulted in only experimental drugs. Nothing has been tested or proven as the condition is so rare.

Charlie's condition is such that even a few minutes fof the life supporting machines would be fatal. The machines are being kept on now because the courts have ordered it. At one point a month or so back the UK courts determined that GOSH could withdraw treatment, but Connie and Chris (the parents) then went to the European Court of Human Rights, which ordered that Charlie be kept alive whilst they investigated the case.
At that point the added publicity led to the likes of Trump and the Pope getting involved.
Then the US doctor offered to go to the UK to meet with GOSH, and as the hospital has always said, it will investigate any viable treatment, hence more prolonging of Charlie's life.
Now this latest issue has come up. The US has taken this step because it believes that if Charlie is a US citizen then that may overrule the UK courts current ruling, which states that Charlie cannot be removed from GOSH without the High Court's permission. It is thought that if the child is a citizen of another country, that may affect the ruling.
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Old Jul 20th 2017, 2:18 pm
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Default Re: Charlie Gard granted U.S Citizenship by congress

Guess the sarcasm didn't come across. I know that the baby is getting the best of medical care in the UK and that the care in the US will not be any better than what he has been receiving at present. US medical care is good but so is the medical care in England, France, etc.

Doctors and hospitals are notorious for playing benefactors and offering up their services at no cost just for the sake of getting their names before the public. I applaud those medical institutions and personnel who come to the aid of children who need a life saving surgery or treatment that they are unable to get in their own country. This, however, is not what Charlie Gard is about. He is being admirably cared for in his own country.

As a parent and grandparent, I, too, would do all I humanly could do to save their life. There does come the time when a parent must confront the reality that there is nothing that can medically be done to save the life of the child they love. It is the most heart retching situation a parent could be in to make that decision that support is to be turned off and a life allowed to ebb away.

The decision does not belong in a court. It belongs with the parents and the medical team. I'm glad to hear that the US doctor was willing to come to the UK and explain the new treatment to GOSH. That is what I originally thought should have been done from the beginning. The US needs to keep itself out of the decision of another country's high court. They certainly would be angry if the another country's court or government tried to interfere in their decision.

Last edited by Rete; Jul 20th 2017 at 2:22 pm.
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Old Jul 20th 2017, 2:26 pm
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Default Re: Charlie Gard granted U.S Citizenship by congress

Originally Posted by Rete
Guess the sarcasm didn't come across. I know that the baby is getting the best of medical care in the UK and that the care in the US will not be any better than what he has been receiving at present. US medical care is good but so is the medical care in England, France, etc.

Doctors and hospitals are notorious for playing benefactors and offering up their services at no cost just for the sake of getting their names before the public. I applaud those medical institutions and personnel who come to the aid of children who need a life saving surgery or treatment that they are unable to get in their own country. This, however, is not what Charlie Gard is about. He is being admirably cared for in his own country.

As a parent and grandparent, I, too, would do all I humanly could do to save their life. There does come the time when a parent must confront the reality that there is nothing that can medically be done to save the life of the child they love. It is the most heart retching situation a parent could be in to make that decision that support is to be turned off and a life allowed to ebb away.
You are so right Rete, Charlie is getting the best care possible, in a hospital renowned for being the best in the world for children's care. If there was any treatment available then GOSH would have done all it could to facilitate Charlie's access to it. Facilitating meetings with the doctor from the US may result in something, who knows, if it does then GOSH will re-evaluate his treatment plan, naturally.

So many people seem to think this is a sudden issue. Its not. He's been in the care of GOSH since November. Its just come to a head because of the court action taken by the parents when GOSH advised they could do no more for him.
Equally so many people seem to think that there is treatment available somewhere. There isn't. The hospital isn't preventing access to treatment, there just is no treatment available. Heartbreaking for the whole family, and a really tough one for the staff who have cared for him for months.

Turning his case into a circus is doing no-one any good. Some of the comments on facebook are just ludicrous, abusing the staff, the hospital, the courts. People really need to take a step back and understand that everyone wants the best for him, but sometimes the best is also the saddest option.
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Old Jul 20th 2017, 3:00 pm
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Default Re: Charlie Gard granted U.S Citizenship by congress

Originally Posted by Rete




The decision does not belong in a court. It belongs with the parents and the medical team.

It's the medical team at GOSH that want his life support removed.

Whilst I agree with you morally that the decision as to what happens to a child should lie with the parents, the law in England is different. Under the Children's Act a public body can request that the courts overrule the parents if they feel, based on professional evidence which they must present, that it is in the best interests of the child.

Incidentally this is not the only time such a thing has happened. But this one has a more slick PR campaign behind it. Recently there was a child with cancer in Southampton Hospital (Ashya King) whose parents had heard about and researched proton beam therapy in Prague that could cure him but was not approved by NICE in the U.K. as a treatment for cancer (so not available). The parents snuck him out of the hospital and took a ferry to the continent. A manhunt ensued and they were found in Spain and arrested and spent a night in jail. The boy was able to get to Prague, has his treatment and by all accounts is now healthy and well. I do remember that case initially only making the local news on the south coast and then eventually making the main news. His parents were somewhat vilified by people for removing him from Southampton Hospital and putting his life at risk (as it was claimed by the hospital) whereas this time the parents are being seen as heroes, stopping at nothing to try and help their son.
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Old Jul 20th 2017, 3:25 pm
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Default Re: Charlie Gard granted U.S Citizenship by congress

Originally Posted by Twinkle0927
It's the medical team at GOSH that want his life support removed.
They make their informed clinical decision that its in the best interests of the child for him to die, but in big cases they rarely enact these decisions without the courts sanction, without that adversarial process allowing others to disagree and a weighing of evidence by impartial legal experts - as it should be imho.
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Old Jul 20th 2017, 3:55 pm
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Default Re: Charlie Gard granted U.S Citizenship by congress

Originally Posted by uk_grenada
They make their informed clinical decision that its in the best interests of the child for him to die, but in big cases they rarely enact these decisions without the courts sanction, without that adversarial process allowing others to disagree and a weighing of evidence by impartial legal experts - as it should be imho.
Agreed. They didn't just decide this themselves. They sought the back-up of the courts in their decision also.
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Old Jul 20th 2017, 4:01 pm
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Default Re: Charlie Gard granted U.S Citizenship by congress

Originally Posted by Twinkle0927
It's the medical team at GOSH that want his life support removed.

Whilst I agree with you morally that the decision as to what happens to a child should lie with the parents, the law in England is different. Under the Children's Act a public body can request that the courts overrule the parents if they feel, based on professional evidence which they must present, that it is in the best interests of the child.

Incidentally this is not the only time such a thing has happened. But this one has a more slick PR campaign behind it. Recently there was a child with cancer in Southampton Hospital (Ashya King) whose parents had heard about and researched proton beam therapy in Prague that could cure him but was not approved by NICE in the U.K. as a treatment for cancer (so not available). The parents snuck him out of the hospital and took a ferry to the continent. A manhunt ensued and they were found in Spain and arrested and spent a night in jail. The boy was able to get to Prague, has his treatment and by all accounts is now healthy and well. I do remember that case initially only making the local news on the south coast and then eventually making the main news. His parents were somewhat vilified by people for removing him from Southampton Hospital and putting his life at risk (as it was claimed by the hospital) whereas this time the parents are being seen as heroes, stopping at nothing to try and help their son.
The NHS now has it's own Proton Beam machine.
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Old Jul 20th 2017, 4:17 pm
  #44  
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Default Re: Charlie Gard granted U.S Citizenship by congress

In the King case, the NHS didn't have enough evidence to say that in that child's case, they would get a significantly better outcome with the Proton Beam machine (ISTR that there were different pros and cons with NHS v Proton Beam but the NHS offered treatment offered was estimated to have equivalent long term outcome as Proton Beam). The parents obviously disagreed.

In the case of Charlie Gard, I think his poor parents have painted themselves into a corner in their grief and distress. They seem to be somehow stuck in a type of denial and unable to accept the scientific and medical facts, and are not accepting the advice and support of the GOSH medical team. Every day, families around the world take the heavy decision to allow the withdrawal of life support for their loved ones - I can't see that those families love any less, that they grieve any less, but somehow they get through it. The Gards seem unable and/or unwilling to move to the next stage, and are looking very gaunt and ill, it's dreadful to see, and I think they are very badly served by their extended family and friends, and the appalling Charlie's Army facebook group - there's a PhD in group dynamics and hysteria via social media waiting to be written there.

I would recommend the GOSH FAQ on the caseas it contains links to the court cases, which have the facts laid out in a plain manner away from sensational press reports. If you read them, you can't help wonder how on earth the situation has got to the stage it has. What a circus, poor little boy.
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Old Jul 20th 2017, 4:23 pm
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Default Re: Charlie Gard granted U.S Citizenship by congress

Originally Posted by Pollyana
You are so right Rete, Charlie is getting the best care possible, in a hospital renowned for being the best in the world for children's care. If there was any treatment available then GOSH would have done all it could to facilitate Charlie's access to it. Facilitating meetings with the doctor from the US may result in something, who knows, if it does then GOSH will re-evaluate his treatment plan, naturally.

So many people seem to think this is a sudden issue. Its not. He's been in the care of GOSH since November. Its just come to a head because of the court action taken by the parents when GOSH advised they could do no more for him.
Equally so many people seem to think that there is treatment available somewhere. There isn't. The hospital isn't preventing access to treatment, there just is no treatment available. Heartbreaking for the whole family, and a really tough one for the staff who have cared for him for months.

Turning his case into a circus is doing no-one any good. Some of the comments on facebook are just ludicrous, abusing the staff, the hospital, the courts. People really need to take a step back and understand that everyone wants the best for him, but sometimes the best is also the saddest option.
Tough for the staff ? They will go on to the next patient, they have to harden their hearts to some degree to be in such a job.

You say that everyone wants the best for him but two people we can say without a doubt do, the parents. One of my children had a medical problem, which thankfully was resolved. I certainly would not have let any doctor or hospital or bureaucrat interfere with what I determined was best for my child.
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