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Re: sadly Charlie Gard has left us

My heart breaks for his parents.  May he RIP

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Re: sadly Charlie Gard has left us

[ Edited ]

I feel so bad for the family.  I can't imagine being in their shoes.  It's so sad.

 

The lesson is that it's also sad and horrific that so many babies and adults around the world...and right here in the US... also need help but can't find it here.

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Re: sadly Charlie Gard has left us


@CalmInTheHeart wrote:

I feel so bad for the family.  I can't imagine being in their shoes.  It's so sad.

 

The lesson is that it's also sad and horrific that so many babies and adults around the world...and right here in the US... also need help but can't find it here.


If, by can't find it here, you mean can't afford it, that is certainly true.  But going to single payer where treatment is necessarily limited by cost - and then refusing to allow anyone to pay for treatment that is not covered is not the answer.  If that happens new experiemental advances will stop since there will be no one to pay for them.

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Re: sadly Charlie Gard has left us


@Cakers wrote:

@JustJazzmom wrote:

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.


@JustJazzmom  Dr. Hirano was given full access to all records including scans.  He was also given the right to examine Charlie but it is unclear if he ever did.  Dr. Hirano was given full temporary staff privileges during his stay at Great Ormond Street Hospital.

 

Dr. Hirano was also joined by an Italian Doctor and other medical experts in this field.

 

The Sun is not reporting the whole story.


My English SIL says The Sun is the equivalent of the National Enquirer here.

 

 From my SIL: 

 

"The Sun is more the equivalent of the National Enquirer or just above that level. It’s a national newspaper and used to have a large circulation (pre-internet). It was best known for its Page 3 topless models.

 

 

The comments that I read about Hirano were reported again in The London Times (like your NY Times) again today: that, though he offered treatment back in Jan, he did not read any of Charlie’s medical reports or look at any scans until he flew to London a couple of weeks ago, in spite of being invited to do so by the hospital (GOSH is our top children’s hospital and usually people praise it to the sky); he had some sort of financial interest or connection to the treatment or drug company involved; the treatment had never been tried even on experimental mice with Charlie’s condition so Charlie was basically an experiment. The general impression is that he offered the parents false hope without following through correctly and maybe did more harm than good. His name was only released to the press about a month ago. Before that, reporting restrictions were in place and no one knew who he was.

 

 

Charlie’s story is very sad as with the best of intentions, the worst of outcomes has been achieved. The parents will never believe that Charlie’s death was inevitable or that he was profoundly disabled. They are still insisting that if he had been treated back in the winter, he would have made a complete recovery (something that was never promised). His parents have spent the last few days trying to bring Charlie back to their flat, a totally impossible scenario due to the equipment and level of medical care required to keep him comfortable up to the moment of death. He was transferred to a hospice where he died. The parents’ request was unreasonable. It’s been very difficult as Charlie ‘supporters’ have been threatening hospital staff and other patients going to GOSH. It’s telling that Charlie’s parents tried to transfer him to another hospital but no other UK hospital would accept him. Social media has not been at its best here either as lots of people with their own agendas or no concept of what this disease is like have jumped on the bandwagon to keep Charlie alive."

☼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 I ask again - is the CNN  story I posted of the father who says his son had the same condition - who was told there was NO hope - and whom Dr. Hirano treated - and then the son did - and is continuing to - improve.  Is that all a lie?

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Re: sadly Charlie Gard has left us

There are many kinds of mitochondrial DNA depletion diseases. This one that is improving probably had the one that is amenable to treatment. I'm not a geneticist and if there are any here, I'm sure they could explain better the differences between both mitochondrial diseases.  

☼The best place to seek God is in a garden. You can dig for him there. GBShaw☼