Yet another tweet from President: Charlie Gard

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_Jersey Girl
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Re: Yet another tweet from President: Charlie Gard

Post by _Jersey Girl »

Chap I'm not seeing something in the above article, is it there and I'm glazing over?

Prior to Hirano visiting the UK he claimed that he'd reviewed Charlie's MRI, that he saw no structural damage to the brain and that he assessed that Charlie had a 11-56% chance of being helped by the treatment.

How does that fit into your above article and where? Was the claim that he reviewed the MRI prior to making the trip a lie?
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Re: Yet another tweet from President: Charlie Gard

Post by _Jersey Girl »

If anyone's interested, here's how the petition facilitators are following up via email. I'm not going to duplicate the bolded portions that appear in the email. They mentioned the 11%-56% claim that I mentioned above in this.

It comes with a heavy heart that I must inform you that Chris Gard and Connie Yates made the toughest decision any parent could possibly make -- letting go of their child.

Before I dive into the details, I want to thank our members, Americans United for Life and their members, and the 557,213 active citizens who were moved by Charlie to join our campaign to save his life. Thank you.

The right to life will always be embedded into our mission and will always be the motive behind of our goals.

Our assignment was two-fold but carried the primary focus of saving Charlie Gard’s innocent life. We also pleaded with the Great Ormond Street Hospital to give Charlie’s parents the right to decide what’s best for their son. I will explain with more detail below, but Charlie’s parents were right all along. They should’ve been permitted to take their child the United States to seek treatment back in January, then again in April.

But, here we are in July. And, yesterday, the parents of Charlie Gard, Chris Gard and Connie Yates, were forced to end their long legal battle to save their child’s life. They will no longer request that Charlie be allowed to go to the United States for life saving treatment. Instead, they’ll spend the last moments of Charlie’s life with him in peace as Great Ormond Street Hospital’s doctors plan to take him off life support at the end of this week.

We must continue to pray for Charlie Gard and his family. Let us join together in this call to action for prayer.

Charlie suffers from a rare genetic disorder, mitochondrial DNA depletion syndrome, which can cause weakened muscles and organ dysfunction, among other symptoms.

Throughout this process, medical experts and doctors were primarily concerned with two factors: muscle deterioration and brain function.

It’s complex, but here’s what we now know…

For the beginning, Great Ormond Street Hospital maintained the position that Charlie is brain dead and his muscles were too far gone for any additional medical intervention so he should be allowed palliative care for “death with dignity.”

Great Ormond Street Hospital first refused the request made by Charlie’s parents, to take their son to the United States for treatment by Dr. Michio Hirano, in January. At that point in the process, Dr. Hirano agreed to treat Charlie because he believed, and other leading experts believed, there was significant chance for improvement. It turns out that Charlie’s best hope to live a normal life was for him to start receiving treatment back in January. Great Ormond Street Hospital refused Charlie this chance.

Following this, the Gard family spent 4 full months in court fighting to take Charlie to the United States.
On, June 27, 2017, the European Court of Human Rights denied Charlie’s parents’ appeal. It appeared to be the end of the road for Charlie.

June 29th, we jumped into action -- launching our campaign asking the hospital to honor the request of Charlie’s parents to take their son to the United States for treatment.

On July 9th, Chris Gard and Connie Yates delivered our petition to the Great Ormond Street Hospital.

On July 10th, during the preliminary hearing, Justice Francis acknowledged the 350,00 petition signatures and the barrister for the hospital admitted that the international pressure forced the hospital to ask for a new hearing.

After what appeared to be the end of the road for Charlie, Dr. Michio Hurano, a medical expert on the condition from the United States, again, evaluated Charlie’s March test results and was convinced there was an 11% to 56% chance in improvement of Charlie’s muscle function and a “significant chance” to improve Charlie’s brain condition with an experimental treatment that Charlie could take orally. Dr. Hirano testified to this under oath in court.

Justice Francis invited Dr. Hirano to the United Kingdom to evaluate Charlie in person. Dr. Hirano submitted that Charlie’s latest results showed that there was no conclusive evidence of irreversible brain damage. However, it was determined that Charlie’s muscle structure has deteriorated past the point of rehabilitation.

This was not the case in January, nor was it the case in March and April when Charlie was last tested. If Justice Francis or Great Ormond Street Hospital would have allowed Charlie to go to the United States back in April, Charlie could have had a chance at a normal life.

They missed two opportunities to make the right decision to allow Charlie to seek lifesaving treatment in the United States.

It leaves the world to wondering: what would’ve become of Charlie if Great Ormond Street Hospital listened to his parents back in January and allowed Charlie to travel with his parents to the United States for treatment?
Again, I really want to thank everyone who participated in this campaign. We did everything we could.
Created our petition to save Charlie Gard on June 29th.

Shortly thereafter partnered with Americans United for Life to increase our impact.

By July 9th, we collected 350,000 signatures and printed the petition for Charlie’s parents to deliver to Great Ormond Street Hospital.

July 9th, we rallied outside of the Great Ormond Street Hospital.

We held several, successful, subsequent rallies outside the Royal Courts of Justice.

We finished our campaign with 557,213 signatures.

We know for a fact that the public outcry made a difference.

We helped influence the Great Ormond Street Hospital to petition the court for a second hearing; moved on the heart of Justice Francis to invite Dr. Hirano to come to the United Kingdom to have an opportunity to evaluate Charlie in person; and put the decision of Charlie’s best interest in the hands of his parents.

Personally, this is a difficult end to this campaign. But, Charlie’s story will not be in vain. We’ve always fought for the right to life and for the voiceless – and with your help, we will continue to do just that.

For life, family, and liberty,
Gregory Mertz and the entire CitizenGO team
Failure is not falling down but refusing to get up.
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_Chap
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Re: Yet another tweet from President: Charlie Gard

Post by _Chap »

Jersey Girl wrote:Chap I'm not seeing something in the above article, is it there and I'm glazing over?

Prior to Hirano visiting the UK he claimed that he'd reviewed Charlie's MRI, that he saw no structural damage to the brain and that he assessed that Charlie had a 11-56% chance of being helped by the treatment.

How does that fit into your above article and where? Was the claim that he reviewed the MRI prior to making the trip a lie?


Can you give me a link to Hirano's statement to which you refer?

The statement made to the court by the hospital states that:

It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April.


That statement could be read as stating that Hirano had never viewed any of the child's brain imaging, but it could I suppose simply be saying that Hirano gave evidence in court without having seen the child's recent brain imaging.

I have to say that it seems extraordinary that Hirano gave evidence without making an examination of the child, something which the hospital had been inviting him to do since January of this year. Why? Goodness only knows. The money that the parents had raised could certainly have paid his travel expenses.

It seems to be a dreadful story of desperate parents grasping at hope that may have been quite illusory. Hirano's role and motivation in all this (given his financial interest) does seem to deserve investigation by a journalist with the appropriate experience.
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Re: Yet another tweet from President: Charlie Gard

Post by _Jersey Girl »

Chap,

I couldn't find a direct statement. I nabbed this off the first search hit I got. Just scroll down until you see the percentage numbers and you'll see it.

http://www.cnn.com/2017/07/14/health/ch ... index.html
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_Jersey Girl
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Re: Yet another tweet from President: Charlie Gard

Post by _Jersey Girl »

Adding...remember when they were saying that Hirano said there was a 10% chance the procedure could help improve the child's condition? I clearly remembered reading the 11-56% chance and I think I may have even posted to that effect on this thread or another.

Just search "Hirano 11%-56%" and you'll come up with multiple hits. I haven't seen a direct quote anywhere or a copy of a written statement authored by Hirano.

It'd be nice to know what the exact truth is. Not that it matters to the outcome but if as you say, this could have been entirely a manipulation for financial gain...I'd really like to know that.
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_Chap
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Re: Yet another tweet from President: Charlie Gard

Post by _Chap »

Jersey Girl wrote:Chap,

I couldn't find a direct statement. I nabbed this off the first search hit I got. Just scroll down until you see the percentage numbers and you'll see it.

http://www.cnn.com/2017/07/14/health/ch ... index.html


That page says:

On Thursday, Hirano told Justice Nicholas Francis that the baby's MRI scan did not necessarily indicate structural damage to the brain. He said there was an "11% to 56% chance of clinically meaningful improvement" in muscular function with the proposed treatment. Hirano added that keeping Charlie on a ventilator would not cause him harm because he did not seem to be in any significant pain.


'Thursday' must be Thursday July 13, since that page is dated July 17.

But according to the hospital, who probably know what they are talking about, when Hirano made that statement

... not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April.


What on earth was he doing giving evidence of that kind without examining the medical records, the brain imaging or the expert opinions - or even examining the child?

I hope things are not as they seem, but I don't like the feel of this at all. I really want to see a transcript of Hirano's evidence on July 13. I hope that will make him look rather better.

I think we have to bear this in mind from the hospital's statement:

When the hospital was informed that the Professor [Hirano] had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed.


Great Ormond Street Hospital for Sick Children has 0% interest in seeing its patients die, and 100% interest in seeing them get better. Their disappointment was certainly quite genuine:

It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie.
Zadok:
I did not have a faith crisis. I discovered that the Church was having a truth crisis.
Maksutov:
That's the problem with this supernatural stuff, it doesn't really solve anything. It's a placeholder for ignorance.
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Re: Yet another tweet from President: Charlie Gard

Post by _Jersey Girl »

Chap wrote:
That page says:

On Thursday, Hirano told Justice Nicholas Francis that the baby's MRI scan did not necessarily indicate structural damage to the brain. He said there was an "11% to 56% chance of clinically meaningful improvement" in muscular function with the proposed treatment. Hirano added that keeping Charlie on a ventilator would not cause him harm because he did not seem to be in any significant pain.


'Thursday' must be Thursday July 13, since that page is dated July 17.


I can find no such statement earlier than July 14 publication date. I agree that it must have been made on July 13. The % statement attributed to Hirano was made before he traveled to the UK.

Which goes to my next question...

But according to the hospital, who probably know what they are talking about, when Hirano made that statement

... not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April.



What on earth was he doing giving evidence of that kind without examining the medical records, the brain imaging or the expert opinions - or even examining the child?


Are they referring to the statement he made before or after he went to the UK to examine Charlie Gard?

If they're referring to the 11%-56% statement he made while still stateside, then someone is lying, because the original % claim was made based on the claim that he had at least reviewed an MRI prior to going to the UK.

I agree that something doesn't add up here and I don't like it either.
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Re: Yet another tweet from President: Charlie Gard

Post by _Jersey Girl »

Rest in peace, dear little Charlie Gard.
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Re: Yet another tweet from President: Charlie Gard

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I am sorry.
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Re: Yet another tweet from President: Charlie Gard

Post by _Jersey Girl »

I have to say this. This little baby boy made me want to learn about a disease and treatments, and a court system I really knew nothing about. His story was the catalyst for my research and I'm sure the research of others. He made his mark on this world before he left it.

Never underestimate the power and potential of a young child.

:-)
Last edited by Google Feedfetcher on Fri Jul 28, 2017 6:58 pm, edited 1 time in total.
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