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Re: sadly Charlie Gard has left us


@bonnielu wrote:

Perhaps someone will fill me in.  Did the doctor who came from the US say he could not save him.  Or was he not allowed to leave or be treated?

 

@bonnielu


What I heard was that he wasn't really on top of their case and Charlie was sicker than he had known.

 

The parents were upset, saying the American MD had given them false hope.

 

The UK doctors said they thought Charlie was at a new stage where they believed he was now suffering.

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Re: sadly Charlie Gard has left us


@bonnielu wrote:

Perhaps someone will fill me in.  Did the doctor who came from the US say he could not save him.  Or was he not allowed to leave or be treated?


 

 

 

 

@bonnielu

 

 

 

 

The doctor who wanted to try his experimental treament on Charlie, said that it was too late to try the treament.

 

 

In other words, Charlie was too far gone to try the experimental treatment.

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Re: sadly Charlie Gard has left us

charlie.jpg

 

good night, sweet prince. 

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Re: sadly Charlie Gard has left us

Thanks for the clarification.  I had so hoped for a miracle and this doctor would save him.  So sad.

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Re: sadly Charlie Gard has left us

It was inevitable, he's at peace now and pain free.  I just hope that the parents can make peace with it, put aside their anger and bitterness and grieve.  Like any other parent who loses a child.  It might seem like a cruel world to them now but that's not the way it is.  Everyone involved only had Charlie's best interest at heart and the doctors, nurses, medical staff are heroes.  They do the work that one us can do and sometimes that means making the hard decisions.  

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Re: sadly Charlie Gard has left us

timeline 

  • August 4 2016 - Charlie Gard is born a ''perfectly healthy'' baby at full term and at a ''healthy weight''.
  • September 2016 - Charlie's parents notice that he is less able to lift his head and support himself than other babies of a similar age. Doctors discover that he has a rare inherited disease - infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS).
  • October 2016 - Charlie has become lethargic and his breathing is shallow and he is transferred to the Great Ormond Street Hospital for Children in London on October 11.
  • December 2016 - Charlie spends his first Christmas in hospital with his parents putting a festive bib on the youngster and sharing a picture captioned ''our little elf''.
  • January 2017 - A crowd-funding page is set up to help finance trial therapy in the United States.
  • March 3 2017 - Great Ormond Street bosses ask Mr Justice Francis to rule that life-support treatment should stop.
  • April 11 - Mr Justice Francis says doctors can stop providing life-support treatment after analysing the case at a hearing in the Family Division of the High Court in London.
  •  May 3 - Charlie's parents ask Court of Appeal judges to consider the case.
  •  May 23 - Three Court of Appeal judges analyse the case and dismiss the couple's appeal two days later.
  •  June 8 - Charlie's parents lose fight in the Supreme Court - his mother screams as justices announce their decision.
  •  June 20 - Judges in the European Court of Human Rights start to analyse the case after lawyers representing Charlie's parents make written submissions.
  •  June 27 - European court judges refuse to intervene. A Great Ormond Street spokeswoman says the European Court decision marks ''the end'' of a ''difficult process''. She says there will be ''no rush'' to change Charlie's care and says there will be ''careful planning and discussion''.
  •  June 29 - Charlie's parents say his life-support will be switched off on Friday June 30.
  •  June 30 - They say GOSH has agreed to ''give us a little bit more time'' with Charlie. They ask for privacy ''while we prepare to say the final goodbye''.
  •  July 2 - Pope Francis calls for the couple to be allowed to ''accompany and treat their child until the end'', saying he has followed the case with ''affection and sadness''.
  •  July 3 - US president Donald Trump intervenes, tweeting: ''If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.''
  •  July 4 - Bambino Gesu, the Vatican's children's hospital in Rome, offers to take Charlie in.
  •  July 10 - Charlie's parents return to the High Court and ask Mr Justice Francis to carry out a fresh analysis of the case. Mr Justice Francis says he will consider any new evidence.
  •  July 17 - Michio Hirano, the New York neurology professor who offered to treat Charlie, travels to London to examine the little boy, discuss the case with Great Ormond Street doctors and other clinicians and examine fresh scans.
  •  July 21 - Lawyer representing Great Ormond Street says a new scan makes for ''sad reading''.
  • July 22 - Great Ormond Street chairwoman Mary MacLeod says doctors and nurses have been subjected to abuse in the street and received thousands of threatening messages in recent weeks.
  • July 24 - Charlie's parents announce their decision to end their legal fight, saying: "We are sorry we could not save you." Mr Justice Francis had been scheduled to analyse what his parents said was fresh evidence at a hearing in the Family Division of the High Court. But as the hearing got under way, the family's barrister Grant Armstrong told the judge: "This case is now about time. Sadly time has run out."
  •  July 25 - Lawyers representing Charlie's parents and Great Ormond Street Hospital are back in court for a hearing at which the parents' wish to take their son home to die was discussed.
  • July 26 - Charlie's parents decide he should spend his final days in a hospice but remain in dispute with Great Ormond Street Hospital over the length of time he should stay there. Mr Justice Francis says if the parties cannot agree before noon the next day, Charlie would be moved to a hospice and life-support treatment would end soon after.
  • July 27 - An order issued by court officials and drawn up by Mr Justice Francis sets out arrangements for Charlie's final hours. The plan will see him move to a hospice, where life-support treatment will be withdrawn soon after.
  • July 28 - A family spokeswoman confirms Charlie has died.

 

Fighting on: Charlie Gard and his father. The doctors say his case is hopeless, but his parents don't accept that

 

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Re: sadly Charlie Gard has left us


@bonnielu wrote:

Perhaps someone will fill me in.  Did the doctor who came from the US say he could not save him.  Or was he not allowed to leave or be treated?


 

       There never was any doctor who said he could treat Charlie.  There is a doctor who is doing reseach on a condition that very similar to Charlie's.  It's the very early stages of his research and he I believe he said he "treated" 12 patients and one had some minor improvement.  That child was able to breathe off the ventilator but there was still no improvement in brain function.  When he got to England he said that Charlie's illness had progressed to far, he would not be a good subject for his research.  

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Re: sadly Charlie Gard has left us

The American neurologist didn't see the child's brain scans or examine Charlie. According to the Britush paper the Sun, he also had a financial stake in the neucleotide treatment, which of course raises ethical questions.

☼The best place to seek God is in a garden. You can dig for him there. GBShaw☼
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Re: sadly Charlie Gard has left us

So then to the posters who say there is no actual treatment and no doctor/hospital performing it - then is this CNN report untrue?

 

 

(CNN)An American father is speaking out about his child's experience with an experimental treatment the parents of Charlie Gard are fighting for their baby to access. 

 

Arthur Estopinan said his son, Arturo, was diagnosed with the same rare disease that Charlie has, mitochondrial DNA depletion syndrome, when he was 1 -- though Arturo's is said to be a less severe variation of the disease. The disease causes muscle weakness and loss of motor skills, which means standing, walking, eating, talking or even breathing is almost impossible.

 

Arturo was born in 2011. Estopinan was initially told by doctors that his son would die a few months after his diagnosis and that there was no medical treatment for his condition.

 

 Young Arturo Estopinan received an experimental treatment for mitochondiral DNA depletion syndrome.

 

Estopinan told HLN's Erica Hill on Tuesday that he and his wife, Olga, were determined to do something.

 

"I started calling all of the doctors I could, from Harvard to Stanford and everyone in between, Ohio, and all of the major pediatric medical centers," Estopinan said.

 

"Eventually, the last one was Dr. Hirano in New York City. I was this close to telling my wife, 'there's nothing we can do.' Thank God, Dr. Hirano said, 'we're doing a clinical protocol, and we believe these medications will help your son.' "

 

Dr. Michio Hirano, a neurologist at Columbia University Medical Center in New York who specializes in myopathies and other neuromuscular diseases, has developed an experimental therapy that has been used on at least one American patient. That one known patient was Arturo, and his father said the treatment helped the boy start moving his muscles.

 

"They have allowed him to get stronger by moving his arms, his fingers, his legs. He's even trying to move his hips," Estopinan said. "The other day, I put one of these new songs from 'Sing,' from the Disney movie, on, and he started to move his hip and stomach. He's definitely willing to dance, God willing, very soon."

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Re: sadly Charlie Gard has left us

[ Edited ]

@JustJazzmom

 

update:  the doctor speaks:

 

Dr Hirano said: ‘I became involved in Charlie’s case when I was contacted by his parents, and I subsequently agreed to speak with his doctors to discuss whether an experimental therapy being developed in my lab could provide meaningful clinical improvement in Charlie’s condition     

‘As I disclosed in court on July 13, I have relinquished and have no financial interest in the treatment being developed for Charlie’s condition.

‘Unfortunately, an MRI scan of Charlie’s muscle tissue conducted in the past week has revealed that it is very unlikely that he would benefit from this treatment.’