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**Updated** to include 'Charlie's Law' - Charlie Gard: US hospital 'offers free treatment' to terminally ill baby after Donald Trump intervenes - Page 2 Mm11

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**Updated** to include 'Charlie's Law' - Charlie Gard: US hospital 'offers free treatment' to terminally ill baby after Donald Trump intervenes

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Post by Verdi on 12.07.17 15:40

@MayMuse wrote:Please  see my posts upthread which show news/info relating to Charlie's results/condition  taken from Charlie's campaign in support of him, which I actually posted days ago! 
Then I apologise @MayMuse - I mistakenly thought when you said "there are notes (medical) released" that you actually meant 'there are medical notes released'.  I was thus expecting an official document detailing Charlie Gard's condition and past/present treatment plan.

@MayMuse posted days ago [snipped]..

"There are notes ( medical ) released... Charlie is not brain dead neither is he blind... I wish people would research before believing everything that is put out .... if I get some time today I will post up some of Charlies results".
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I totally agree with you - I too wish people would research before believing everything that is put out and I will add, also before posting information that hasn't been checked beforehand !!!.  Forever a bone of contention for me.

I also posted very recently, an online summary prepared by Great Ormond Street hospital, in response to questions concerning Charlie Gard's condition and the rationale behind the decision to withdraw life support.  I will repost in case you missed it..

Frequently asked questions about the Charlie Gard court case


Great Ormond Street Hospital has been contacted by many people who share our concern for Charlie, and his parents, and ask for information about the very difficult decisions surrounding Charlie’s care. 
 
As this is a very complex case, we have provided the information below in the form of an FAQ to help those contacting us to understand how Charlie is being cared for at Great Ormond Street Hospital.  
 
Full details about Charlie’s treatment remains confidential and the content of the FAQs is based solely on information that is already in the public domain as a result of the court process. No new information is included out of respect for Charlie and his family. 
 
We hope that those contacting the hospital respect the confidentiality of Charlie and his family and so appreciate that we cannot respond to individual requests for information.
 
If you would like to read the full details of the legal decisions, please refer to the following sources:
 
High Court decision on the British and Irish Legal Information Institute website.
Court of Appeal decision on the British and Irish Legal Information Institute website.
Supreme Court decision available from the UK Supreme Court's You Tube channel.
 
Who is Charlie Gard?
Charlie Gard is a GOSH patient who is currently in our intensive care unit. 
 
What is his condition?
Charlie’s condition is exceptionally rare. He suffers from an inherited mitochondrial disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as “MDDS”. Charlie suffers specifically from the RRM2B mutation of MDDS.1 
 
Charlie’s brain, muscle and ability to breathe are all severely affected. In addition, Charlie has congenital deafness and a severe epilepsy disorder. Charlie's heart, liver and kidneys are also affected.1
 
Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided.1  
 
Charlie's eyelids cannot stay open and his eyes point in different directions because of muscular weakness. Charlie’s retina would struggle to develop and his brainwaves suggest that he is not going to be able to lay down normal visual patterns that should be learned at an early age. Eyesight is not something you’re born with, it develops over time.2 
 
Why is there no treatment available at GOSH?
There is no cure for Charlie’s condition which is terminal. GOSH explored various treatment options, including nucleoside therapy, the experimental treatment that one hospital in the US has agreed to offer now that the parents have the funds to cover the cost of such treatment. GOSH concluded that the experimental treatment, which is not designed to be curative, would not improve Charlie’s quality of life. 
 
How did GOSH come to this decision about his treatment?
GOSH’s clinicians had to balance whether this experimental treatment was in his best interests or not.
 
One of the factors that influenced this decision was that Charlie’s brain was shown to be extensively damaged at a cellular level. The clinician in the US who is offering the treatment agrees that the experimental treatment will not reverse the brain damage that has already occurred.
 
The entire highly experienced UK team, all those who provided second opinions and the consultant instructed by the parents all agreed that further treatment would be futile – meaning it would be pointless or of no effective benefit.1  
 
Why is there a court process?
When parents do not agree about a child’s future treatment, it is standard legal process to ask the courts to make a decision. This is what happened in Charlie’s case.  
 
What is the legal process?
GOSH applied to the High Court for judges to decide whether withdrawal of ventilation and providing palliative care instead of experimental treatment was in Charlie’s best interests.1
 
The High Court ruled this was in Charlie’s best interests on 11 April 2017.
 
Charlie’s parents then appealed to the Court of Appeal. 
 
The Court of Appeal ruled on 25 May 2017 that the High Court decision still stood and that it would be in Charlie’s best interests to be allowed to die with dignity.
 
The parents have applied to appeal to the Supreme Court. The Supreme Court ruled on 8 June 2017 that the Court of Appeal and the High Court decision still stood and that it would be in Charlie’s best interests to be allowed to die with dignity.
 
Why has the legal process lasted so long?
Legal processes take time and the courts are doing their best to expedite the process.  All parties are adhering to the legal process. 
 
The parents have raised money for the treatment, why can’t it take place? 
The High Court and the Court of Appeal have ruled it is not in Charlie’s best interests to receive the experimental treatment in the US. 
 
Even if the treatment does not work for Charlie, won’t it help other children in the future?
The courts base their decisions for treatment on what is in Charlie’s best interests, not what is in the best interests of medical science.1 
 
What about the parental rights?
Although Charlie’s parents have parental responsibility, overriding control is by law vested in the court exercising its independent and objective judgment in the child’s best interests.1 
 
For more details on parental rights during medical treatment, please access the British Medical Association website.
 
What can you tell us about Charlie’s care?
While we cannot discuss confidential information about Charlie’s care, any child who is as unwell as Charlie will receive round the clock care from a team of highly experienced and specialised nurses, doctors and other health professionals.
 
Care for children who are ventilated, as Charlie is, might include suctioning to take out extra fluid when a child is not able to cough for themselves, having their vital signs constantly monitored, regularly turning a child to try to prevent pressure sores if they are unable to move independently and trying to ensure a child’s skin is in optimal condition even though they are constantly connected to a ventilator.  
 
In his High Court ruling, 11 April 2017, Mr Justice Francis said: “Charlie has been served by the most experienced and sophisticated team that our excellent hospitals can offer.”1
 
In the Court of Appeal ruling, 25 May 2017, Lady Justice King said: “Charlie and his parents have the benefit of being treated at not only the centre of excellence that is Great Ormond Street Hospital, but of his having been under the care of a world-leading expert on mitochondrial disorders. I would wish to acknowledge the skill and care given to Charlie by the doctors and nurses at Great Ormond Street.”2
 
If the court rules in favour of a withdrawal of treatment order will the life support machine be turned off straight away?
At Great Ormond Street Hospital, our priority in situations like this is to work closely with the family to discuss the next steps in their child’s care. In Charlie’s case we have been discussing for many months, how the withdrawal of treatment may work. There would be no rush for any action to be taken immediately. Discussions and planning in these situations usually take some days – based on the experience of our clinical teams.

http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case
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Post by MayMuse on 12.07.17 16:37

Yes there have been medical reports released and Charlie's parents have been releasing some info  in as much as not to cause anything  which may be deemed legally untoward (data protection & confidential as anyone would realise)  and have made it known that not all is as it seems from GOSH sadly, not the first time any hospital have used their legal and admin  team to "twist" things to advantage and unfortunately it does go on even when nursing staff do not agree! 

Earlier posts made was so anyone could research themselves if they wanted to or had interest in the case I responded intially to hogwash post. 

Your response was End of.. or end of subject.....? 

Controversial case, many differing opinions... but I would never judge any parents who are trying to fight for their own child's life, and have raised funds to cover treatment elsewhere at no cost to NHS...So, as I have said prior... there is a larger picture at play here, and if Charlie's parent lose their rights not only will they lose their beloved son, it will have dire consequences for many down the road.

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Post by joyce1938 on 12.07.17 16:45

The small child that did do well after treatement ,has not got exactly the same as Charlie,a small error in saying its same .Ican well realize what a horrible thing it is .Parents have got to stage ,where they would prefer to go anywhere to have treatement ,ofcourse it could be not the best thing to do ,we are speaking about Charlies rights now ,that is reason it went to court,we parents don't always know what is best .joyce1938
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Post by MayMuse on 12.07.17 16:51

Different medical conditions but remember another controversial case ... Ashya King... Now a thriving boy with a whole life ahead of him... intitially parents arrested for trying to take him to another country for treatment... thank goodness they did!


No matter what the medical condition, however different... Unless  brain dead which Charlie is not... then there is hope... and in many cases parents instinct has secured that hope... 

At the end of the day, courts will use the law and GOSH are using it to the full extent to end Charlie's life...it's a sad and sorry state of affairs and to put Charlie's parents through what already is a nightmare for them and their family is cruel in my opinion.

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Post by Verdi on 12.07.17 20:34

@MayMuse wrote:Yes there have been medical reports released

I responded initially to hogwash post. 
1.  So I was right with my intitial interpretation of your meaning, I quote..  "there are notes (medical) released" - I ask again, where are they?  You said you would try and find the time later to post.

2.  So did I.

Meantime, something to chew on..

Mother's plea for daughter's right to die

How do you decide whether it's right to go on treating a very sick child?

It's the question at the centre of the Charlie Gard case. His parents are not the first to fight for every option to be explored.
Less common is to hear a parent questioning whether their child should continue to receive life sustaining treatment.
Juliet Flower contacted the BBC via social media to tell her story. She believes it would be better for her daughter Rose to be allowed to die.

http://www.bbc.com/news/av/health-40582032/mother-s-plea-for-daughter-s-right-to-die
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ETA:  You wrong me @MayMuse, I don't find you even remotely amusing - to the contrary in fact.

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Post by MayMuse on 12.07.17 23:00

@verdi .. private medical notes can not be made public... only statements via the hospital or the parents can be released...so, whilst medical notes info have been released they can only be put out in a certain way as I've already explained..so if you are that Interested or concerned please do check out their campaign if what I have already posted is not good enough.

Yes I know about the case you have posted... similarly ask why there is no report for the countless children who have survived and are living now as adults. 
Like I've said there is a reason why i feel strongly about Charlie and his parents.



I will not continue in this vein anymore, it is pointless as you continually try as you do with others, to make a point of something or nothing to do what.. to shame them, to show them up? Why? 


As for your ETA... that is exactly what you do and I thought this forum doesn't tolerate personal attacks? The undertone in your comments is quite frankly disturbing. 

Good day!

ETA http://blog.practicalethics.ox.ac.uk/2017/04/debate-the-fiction-of-an-interest-in-death-justice-for-charlie-gard/

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Post by Hobs on 13.07.17 5:33

@Google.Gaspar.Statements wrote:I can see both sides to the 'argument' here.

The parents are in a terrible limbo of pain and anguish and I really feel for them and can understand their fight to save their baby no matter what.

But this tragic case is surely about Charlie and his terrible limbo of pain and anguish. He is the one who is suffering every day, that's if he is suffering, or whether the machine and the drugs are keeping him relatively pain-free, I have no idea.

I suppose it's 'fortunate', in a way, that his life as it is now is all he's ever known and he doesn't know that pain and suffering isn't normal - he's got nothing to compare it to.

What I do find sickening is how this is being played out with the parents told weeks ago that Charlie's life support would be switched off by Court Order, then weeks later he is still being kept alive while there are smidgens of hope given to the parents again.

It's sickening that a Pastor was brought over to say prayers for Charlie and he was denied the opportunity to do that. WHY? Then he was given permission after all. Surely things like this only add to the torment and torture of Charlie's parents?

But there is a case in the USA where a baby girl was given this treatment and she's now living a normal life. If I could see those before and after photos I would be fighting/tweeting/screaming/protesting/demanding/fundraising for the same for my child too, no doubt about it. Charlie's parents have raised a lot of money and they should be allowed to use it on this treatment, in my opinion.

God bless Charlie, and his parents.


**Updated** to include 'Charlie's Law' - Charlie Gard: US hospital 'offers free treatment' to terminally ill baby after Donald Trump intervenes - Page 2 Cy11


Unfortunately the girl does not havce the exact same disease as Charlie.
Only 16 children have ever been diagnosed with the exact same disease as Charlie, all died before months old.
Bear in mind also that  Charlie is far sicker than any of the children the treatment was tested on, Charlie has profound and irreversible brain damage, He has frequent fits which because of his muscle weakness can only be see in eeg;s since his muscles are too weak to do anything.
These fits are causing further damage to his already damaged brain.
He is blind, mute, deaf, unable to breathe unaided or swallow, his organs are failing as well.
Charlie will die sooner rather than later.

The proposed treatment initially by the American doctor (and also GOSH who made a preliminary request to try the drug) withdrew his offer when he saw Charlie's medical records saying Charlie was far sicker than he was led to believe.

The outcome of that discussion is illuminating. The doctor in the USA said as follows:
“Seeing the documents this morning has been very helpful. I can   understand the opinions that he is so severely affected by encephalopathy that any attempt at therapy would be futile.
I agree that is very unlikely that he will improve with that therapy. It is unlikely.”



This sounds like the parents minimized Charlie's symptoms or ommitted certain one completely in order to have Charlie undertake this treatment.

Charlie suffers from the RRM2B mutation of MDDS. 
No one in the world has ever treated this form of MDDS with nucleoside therapy, although patients with a different strain, TK2, have received nucleoside therapy with some recorded benefit. 
In mouse models, the benefit to TK2 patients was put at about 4% of life expectancy. 
There is no evidence that nucleoside therapy can cross the blood/brain barrier which it must do to treat RRM2B, although the US doctor expressed the hope that it might cross that barrier.

In the court judgement it was said that

The court has also been assisted by the written and oral evidence of Dr. B, who is employed as a Consultant Paediatric Intensivist on the Paediatric and Neonatal Intensive Care Unit at Great Ormond Street Hospital.
He has been in his post since February 2004.
 He described Charlie’s severe symptoms as follows:

Progressive respiratory failure
Charlie has been ventilator dependent since presentation at the Great
Ormond Street Hospital and this has progressed so severely that he now has no spontaneous respiratory effect.
In other words, he is kept alive by the ventilator.

Hypotonia/Myopathy
Charlie has progressive weakness of his muscles including his breathing muscles leading to his progressive respiratory failure.
He can no longer move his arms or legs and he is not consistently able to open his eyes enough to be able to see.  Indeed, this leads to the difficulty that his brain is failing to learn to see. 
He cannot react in terms of reaching for fingers or other objects. 
He cannot grasp them.  

Brain Activity
Dr. B confirmed that, whilst Charlie is not brain dead, he is persistently encephalopathic.
In other words, there are no usual signs of normal brain activities such as responsiveness, interaction or crying. 
Dr. B confirmed that this is supported by repeated electrical tests in the form of EEGs.

Bilateral profound sensorineural hearing loss
Charlie is deaf as part of this underlying condition.  

Persistently elevated lactate
This is, I was told, the characteristic feature of mitochondrial disease.
 It was indeed the strongest pointer to this diagnosis in Charlie when he first came to Great Ormond Street.
Charlie suffers also from acute mitochondrial crises.  


Dr. B explained in his oral evidence that, even before Charlie began to suffer from seizures on 15th December 2016, the clinical consensus was that his quality of life was so poor that he should not be subject to long term ventilation, resulting in the advice of the Ethics Committee in November 2016 not to offer Charlie a tracheostomy. 
Dr. B said that, since that time, Charlie has suffered significant deterioration in brain function evidenced by the development of persistent seizures.  


Charlie began to suffer seizures from dec 16th and these have caused a significant deterioration in brain function evidenced by the development of persistant seizures

Charlie will die sooner rather than later even if they have the treatment.
A fit will kill him one or more of his organs will fail, he will get an intersting infection or he will die in his sleep
.

It is claimed by the parents there could be a 10% improvement, Given the severity of his symptoms, what does she think the 10% will be and do?
It won't improve his quality of life, he won't be walking, talking or riding a bike.
He will be lying in his bed connected to life support waiting to die.

https://www.judiciary.gov.uk/wp-content/uploads/2017/05/gosh-v-yates-and-gard-20170411-1.pdf

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Post by Verdi on 13.07.17 15:26

Lessons to learn here I think.

1.  Never ever believe what the media tell you without first checking all information through a reliable source.

2.  Never ever believe anything you read on social media without first checking all information through a reliable source.

3.  Never ever give money to a charity, a limited company, a fundme plea, a reward or any other cry for money without first checking the ligitimacy of the cause, the integrity of the source and the transparency of fund administration.

4.  Never ever allow yourself to be duped by sentimentality without first checking the validity of any case through a reliable source.

We live in a blame culture which has spread beyond control, not helped by archaic libel laws and ambulance chasers.

Look how the McCanns took the gullible public for a roller coaster of a ride !!!

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Post by joyce1938 on 14.07.17 16:22

It seems that the money raised from public ,was not necessary ,at all .if the treatement had been good for childs type illness,it would have been done ,no cash needed at all. It doesn't seem possible this has got to where the poor parents are fooling themselves ,so sad and maybe we would all go that way ,so desperate to keep him .no good to child sadly.joyce1938.
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Post by plebgate on 20.07.17 22:51

Maybe the papers and tv media should stop reporting on such cases until all facts have been made clear.   The general public see a story and comment on what is in the article and why shouldn't they?

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Post by sallypelt on 24.07.17 15:15

Charlie Gard parents end legal fight as time runs out for baby

The parents of terminally-ill baby Charlie Gard have ended their legal challenge to take him to the US for experimental treatment.
A lawyer representing Chris Gard and Connie Yates told the High Court that "time had run out" for the baby.
Grant Armstrong said Charlie's parents had made the decision because an American doctor said it was too late to give him nucleoside therapy.
"The parents' worst nightmare have been confirmed," Mr Armstrong said.

He told the presiding judge Mr Justice Francis that US neurologist Dr Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week.
He added Mr Gard and Ms Yates would now look to establish a foundation so that Charlie's voice "continues to be heard".
They had raised £1.3m in donations to take their 11-month-old abroad for treatment.
Charlie has encephalomyopathic mitochondrial DNA depletion syndrome. He has brain damage and cannot move his arms or legs

May the little darling rest in peace, now!

http://www.bbc.co.uk/news/uk-england-40708343
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Post by aquila on 25.07.17 22:14

I'm not sure I would spend the last days of my baby's life battling to take him home to die. I'd be more likely to spend every single second with my baby and not disturb him. Where he dies is geography isn't it? He's spent such a long time in the care of dedicated medical staff at GOSH who care for his life and his death.

I have avoided posting until now.

RIP little man. God bless you and God bless all the children in GOSH who are ill and I hope that the unforgivable demonstrations outside the hospital didn't interrupt a single second of your lives.
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Post by Jill Havern on 26.07.17 18:18

**Updated** to include 'Charlie's Law' - Charlie Gard: US hospital 'offers free treatment' to terminally ill baby after Donald Trump intervenes - Page 2 Pr10 Peter Rhodes
Award-winning columnist and blogger. Keeping an eye on the tribulations and trivia of a fast-changing world

By Peter Rhodes

NO-ONE should be surprised at the vile threats and insults hurled at staff in Great Ormond Street children's hospital during the Charlie Gard case. The more baby-centred an issue becomes, the more scrotes and scumbags feel the need to spit their fury.

Ten years on, Madeleine McCann discussions online still attract the most filthy and evil comments. It seems the only way some folk can prove their own credentials as caring people is by slagging off other folk. But the more they do it, the more you have to wonder what drives them and what they are trying to hide. Show me someone threatening the Great Ormond Street staff and I'll show you someone with a guilty conscience.

https://www.shropshirestar.com/news/voices/opinions/peter-rhodes/2017/07/26/if-the-yanks-had-made-dunkirk/
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Post by aquila on 28.07.17 18:51

RIP little man. Now please let's see the media and Charlie's parents give dignity to his very short life. Let's not see the family sitting on tv sofas - oh please let's not see this. Please let's see a responsible media who suspend sensationalism and find enough humanity to give this baby a funeral without coverage. Lord knows, that would be the greatest thing they could do for Charlie and for his family. Keep the sanctity of this baby's funeral completely private.
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**Updated** to include 'Charlie's Law' - Charlie Gard: US hospital 'offers free treatment' to terminally ill baby after Donald Trump intervenes - Page 2 Empty Re: **Updated** to include 'Charlie's Law' - Charlie Gard: US hospital 'offers free treatment' to terminally ill baby after Donald Trump intervenes

Post by aquila on 28.07.17 19:34

I'm quoting a person from JATYK, a pro McCann website. I'm only quoting his post regarding Charlie Gard because I think it's worth reading. As for this person's opinion on the Madeleine McCann case I have no words of similarity.

Re: Charlie Gard: Great Ormond Street considers 'new evidence'

**Updated** to include 'Charlie's Law' - Charlie Gard: US hospital 'offers free treatment' to terminally ill baby after Donald Trump intervenes - Page 2 Icon_minipost  Jean-Pierre.t50 Today at 11:46 am
As it happens my eldest son is hospital registrar specialising in anaesthetics and ITU.  I asked him for his take on this case and a brief synopsis is below.  (I don't think there is anything very new here but it's interesting to see the view of a professional dealing with these

"Medical professionals are effective because they can take an expert and professional view, and cannot allow emotion to cloud that judgement or they would not be able to do the job.

This little boy is terminally ill and has brain damage incompatible with life.  He is only being kept alive by agressive medical intervention including pressure ventilation.  If this is withdrawn he will be dead in a very few minutes.  

An ITU, and especially where ventilation is needed, can only work in a hospital setting with access to a wide range of specialist medical and technical staff as well as gas/ secure power supply etc.

If GOSH were to provide a unit in a private home this would be incredibly expensive and may lead to expectations by other patients of an 'a la carte ITU service at home' which is totally unrealistic under the NHS or indeed any other system public or private.  

There are times where a patient just has to be 'let go'.  The decision is best made by the relatives and medical team working together, but ultimately it should be guided by the relevant professionals having regard to quality of life and management of pain"

IMO This is a quite tragic case - made much more tragic by the intervention of the press and people with a political agenda.
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Post by sandancer on 28.07.17 21:45

To Charlie . The frail shell that housed your spirit has gone .

Your energy and  spirit will continue . 

You are moving on to the next big adventure little one .

To your parents , family members and those who cared for you in hospital I wish peace , love blessings and light .    roses

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Post by Verdi on 28.07.17 23:49

Finally Charlie Gard can be at peace - that is the only important issue here.

I'm very concerned about Mr Gard's comment as quoted by the BBC..

"We had the chance but we weren't allowed to give you that chance...."

I ask that thoughts be given to the dedicated staff of Great Ormond Street Hospital who did all in their power for the welfare of little Charlie and thoughts for all the hundreds, if not thousands of children and their parents, who are at this moment experiencing similar sadness through no fault of their own.

Bless you all.

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Post by plebgate on 29.07.17 20:14

Err  why does this blogger mention Maddie McCann and baby Charlie in the same article?

Of course anyone who threatens hospital staff is bang out of order but the article he has written regarding a baby who has just died and a little girl who has disappeared for the last ten years seems to me to have some inflammatory wording such as scrotes and scumbags which is not acceptable to me.

Jumping on bandwagon springs to my mind.

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Post by Jill Havern on 14.06.19 12:54

Hope for Charlie's Law: Parents of 11-month-old Charlie Gard, who died in 2017, get backing for new rule to avoid families having to endure court hearing over children's hospital care

https://www.dailymail.co.uk/news/article-7139685/Parents-11-month-old-Charlie-Gard-backing-Charlies-Law.html?fbclid=IwAR1AolkAE2mniBJkgnRiT22tItc6SPzNY4a5vc12qpNwekbTsRixlMlSKY8
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