Death Notices

[omaghjoe]

For those who refuse to read the details of the case and continue to demand an answer to the question of "why was he refused treatment?", consider this.

The treatment the American doctor was proposing, and would have gone ahead with if allowed, had never been tested for the specific genetic mutation of Charlie's disease, which affected both both his muscles and brain. Not even on mice. It wouldn't have been treatment, it would have been a science experiment. One the treating physician would have a financial interest in.

I assume the parents logic was  if the child is going to die anyway, is this not worth a punt? What was there to lose?

The biggest issue was the apparent pain being suffered by the child, registered by diagnosis but not registered physically by the child's responses which were removed by his condition. Appears to be like a patient with locked in syndrome experiencing pain but not able to show it.

Is this is crux? What does that mean exactly? I took it that there is pain associated with the condition?
Was there also neurological scans associated with pain?

Apologies for questions there is too much garbage online, and the articles posted spend most of their inches talking about Nial Farange and the like.

[Denn Forever]

Sam Shepard - Playwright/Actor aged 73.

[Tony Baloney]

Sam Shepard - Playwright/Actor aged 73.

The Right Stuff one of my favourite films.

[Owen Brannigan]

For those who refuse to read the details of the case and continue to demand an answer to the question of "why was he refused treatment?", consider this.

The treatment the American doctor was proposing, and would have gone ahead with if allowed, had never been tested for the specific genetic mutation of Charlie's disease, which affected both both his muscles and brain. Not even on mice. It wouldn't have been treatment, it would have been a science experiment. One the treating physician would have a financial interest in.

I assume the parents logic was  if the child is going to die anyway, is this not worth a punt? What was there to lose?

The biggest issue was the apparent pain being suffered by the child, registered by diagnosis but not registered physically by the child's responses which were removed by his condition. Appears to be like a patient with locked in syndrome experiencing pain but not able to show it.

Is this is crux? What does that mean exactly? I took it that there is pain associated with the condition?
Was there also neurological scans associated with pain?

Apologies for questions there is too much garbage online, and the articles posted spend most of their inches talking about Nial Farange and the like.

According to the medics they were able to diagnose that little Charlie was experiencing pain as a result of the breakdown at a cellular level, this would been via scans, etc.  It was on this evidence presented to the judge that he decided that prolonging the child's life via artificial ventilation was also prolonging his agony and he should be allowed to pass away as a result of his condition as soon as possible. The parents wanted more time with their child but acting in the child's best interest the judge ordered that the life support should be turned off as soon as Charlie was transferred to the hospice requested by the parents. It would appear that the child died almost immediately.

[omaghjoe]

For those who refuse to read the details of the case and continue to demand an answer to the question of "why was he refused treatment?", consider this.

The treatment the American doctor was proposing, and would have gone ahead with if allowed, had never been tested for the specific genetic mutation of Charlie's disease, which affected both both his muscles and brain. Not even on mice. It wouldn't have been treatment, it would have been a science experiment. One the treating physician would have a financial interest in.

I assume the parents logic was  if the child is going to die anyway, is this not worth a punt? What was there to lose?

The biggest issue was the apparent pain being suffered by the child, registered by diagnosis but not registered physically by the child's responses which were removed by his condition. Appears to be like a patient with locked in syndrome experiencing pain but not able to show it.

Is this is crux? What does that mean exactly? I took it that there is pain associated with the condition?
Was there also neurological scans associated with pain?

Apologies for questions there is too much garbage online, and the articles posted spend most of their inches talking about Nial Farange and the like.

According to the medics they were able to diagnose that little Charlie was experiencing pain as a result of the breakdown at a cellular level, this would been via scans, etc.  It was on this evidence presented to the judge that he decided that prolonging the child's life via artificial ventilation was also prolonging his agony and he should be allowed to pass away as a result of his condition as soon as possible. The parents wanted more time with their child but acting in the child's best interest the judge ordered that the life support should be turned off as soon as Charlie was transferred to the hospice requested by the parents. It would appear that the child died almost immediately.

I hate to bug you Owen but Im struggling with the bold bit and I cant really find anything on-line. Your the best source of information i've uncovered on this...so apologies but im gonna have to ask....

What exactly were the tests that the doctors interpreted as suffering? Where they neurological? Was there details as to their accuracy? Could their accuracy be affected by the child's condition? To what level did they deem the pain? Did the child experience any neurological patterns that could be associated with comfort or happiness when in his parents company?

[Owen Brannigan]

For those who refuse to read the details of the case and continue to demand an answer to the question of "why was he refused treatment?", consider this.

The treatment the American doctor was proposing, and would have gone ahead with if allowed, had never been tested for the specific genetic mutation of Charlie's disease, which affected both both his muscles and brain. Not even on mice. It wouldn't have been treatment, it would have been a science experiment. One the treating physician would have a financial interest in.

I assume the parents logic was  if the child is going to die anyway, is this not worth a punt? What was there to lose?

The biggest issue was the apparent pain being suffered by the child, registered by diagnosis but not registered physically by the child's responses which were removed by his condition. Appears to be like a patient with locked in syndrome experiencing pain but not able to show it.

Is this is crux? What does that mean exactly? I took it that there is pain associated with the condition?
Was there also neurological scans associated with pain?

Apologies for questions there is too much garbage online, and the articles posted spend most of their inches talking about Nial Farange and the like.

According to the medics they were able to diagnose that little Charlie was experiencing pain as a result of the breakdown at a cellular level, this would been via scans, etc.  It was on this evidence presented to the judge that he decided that prolonging the child's life via artificial ventilation was also prolonging his agony and he should be allowed to pass away as a result of his condition as soon as possible. The parents wanted more time with their child but acting in the child's best interest the judge ordered that the life support should be turned off as soon as Charlie was transferred to the hospice requested by the parents. It would appear that the child died almost immediately.

I hate to bug you Owen but Im struggling with the bold bit and I cant really find anything on-line. Your the best source of information i've uncovered on this...so apologies but im gonna have to ask....

What exactly were the tests that the doctors interpreted as suffering? Where they neurological? Was there details as to their accuracy? Could their accuracy be affected by the child's condition? To what level did they deem the pain? Did the child experience any neurological patterns that could be associated with comfort or happiness when in his parents company?

I am unable to give specifics of the medical diagnosis and treatment provided by the medics at GOSH. All that I know is from reading the court papers. It is clearly stated within that the medics believed Charlie could experience pain and was doing so because he suffered epileptic fits and seizures, had encephalopathy and the maintenance of his life required painful procedures. More details is within the papers if you read them, they have been quickly made available for all by the court service. So, I don't know why your extensive web searches have not led you to the core evidence provided in court.

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

http://www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

https://www.supremecourt.uk/cases/docs/charlie-gard-190617.pdf

[johnneycool]

For those who refuse to read the details of the case and continue to demand an answer to the question of "why was he refused treatment?", consider this.

The treatment the American doctor was proposing, and would have gone ahead with if allowed, had never been tested for the specific genetic mutation of Charlie's disease, which affected both both his muscles and brain. Not even on mice. It wouldn't have been treatment, it would have been a science experiment. One the treating physician would have a financial interest in.

I assume the parents logic was  if the child is going to die anyway, is this not worth a punt? What was there to lose?

The biggest issue was the apparent pain being suffered by the child, registered by diagnosis but not registered physically by the child's responses which were removed by his condition. Appears to be like a patient with locked in syndrome experiencing pain but not able to show it.

Is this is crux? What does that mean exactly? I took it that there is pain associated with the condition?
Was there also neurological scans associated with pain?

Apologies for questions there is too much garbage online, and the articles posted spend most of their inches talking about Nial Farange and the like.

According to the medics they were able to diagnose that little Charlie was experiencing pain as a result of the breakdown at a cellular level, this would been via scans, etc.  It was on this evidence presented to the judge that he decided that prolonging the child's life via artificial ventilation was also prolonging his agony and he should be allowed to pass away as a result of his condition as soon as possible. The parents wanted more time with their child but acting in the child's best interest the judge ordered that the life support should be turned off as soon as Charlie was transferred to the hospice requested by the parents. It would appear that the child died almost immediately.

I hate to bug you Owen but Im struggling with the bold bit and I cant really find anything on-line. Your the best source of information i've uncovered on this...so apologies but im gonna have to ask....

What exactly were the tests that the doctors interpreted as suffering? Where they neurological? Was there details as to their accuracy? Could their accuracy be affected by the child's condition? To what level did they deem the pain? Did the child experience any neurological patterns that could be associated with comfort or happiness when in his parents company?

these are the two paragraphs from the GOSH statement that also changed my mind on this;

"At the first hearing in Charlie's case in March, GOSH's position was that every day that passed was a day that was not in his best interests. That remains its view of his welfare. Even now, Charlie shows physical responses to stressors that some of those treating him interpret as pain and when two international experts assessed him last week, they believed that they elicited a pain response.

"In GOSH's view there has been no real change in Charlie's responsiveness since January. Its fear that his continued existence has been painful to him has been compounded by the Judge's finding, in April, that since his brain became affected by RRM2B [his genetic disease] , Charlie's has been an existence devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering."

If the poor wee mite was suffering every day then GOSH and the Judge in question were right considering the US Doctor had no clinical evidence that this procedure he was proposing would be of any benefit to Charlie.
The parents were obviously clinging onto any hope they could and that's normal, but the arsehole of a US doctor who was feeding them this crap even though he hadn't bother to look over Charlies Clinical notes needs reprimanded in some way. He put the parents and the poor kid through even more suffering.

[Applesisapples]

If you think there is any hope however illogical it seems to others you will hold onto it... maybe those who dont have children dont fully understand this.

Lots of people with children, including me, think the parents were misguided at best.

On the face of it a lot of me agrees with this comment. However not having been in their position it is difficult to know what you'd do. One of my childern was seriously ill when born, and whilst it does not approach the situation Charlie's parents were in I can understand why a parent would cling to any hope their child might recover no matter how forlorn. I guess a bit like a woman facing into abortion individuals must make the calls that they feel is right and they can live with and who are we to judge...though many will.

[Owen Brannigan]

For those who refuse to read the details of the case and continue to demand an answer to the question of "why was he refused treatment?", consider this.

The treatment the American doctor was proposing, and would have gone ahead with if allowed, had never been tested for the specific genetic mutation of Charlie's disease, which affected both both his muscles and brain. Not even on mice. It wouldn't have been treatment, it would have been a science experiment. One the treating physician would have a financial interest in.

I assume the parents logic was  if the child is going to die anyway, is this not worth a punt? What was there to lose?

The biggest issue was the apparent pain being suffered by the child, registered by diagnosis but not registered physically by the child's responses which were removed by his condition. Appears to be like a patient with locked in syndrome experiencing pain but not able to show it.

Is this is crux? What does that mean exactly? I took it that there is pain associated with the condition?
Was there also neurological scans associated with pain?

Apologies for questions there is too much garbage online, and the articles posted spend most of their inches talking about Nial Farange and the like.

According to the medics they were able to diagnose that little Charlie was experiencing pain as a result of the breakdown at a cellular level, this would been via scans, etc.  It was on this evidence presented to the judge that he decided that prolonging the child's life via artificial ventilation was also prolonging his agony and he should be allowed to pass away as a result of his condition as soon as possible. The parents wanted more time with their child but acting in the child's best interest the judge ordered that the life support should be turned off as soon as Charlie was transferred to the hospice requested by the parents. It would appear that the child died almost immediately.

I hate to bug you Owen but Im struggling with the bold bit and I cant really find anything on-line. Your the best source of information i've uncovered on this...so apologies but im gonna have to ask....

What exactly were the tests that the doctors interpreted as suffering? Where they neurological? Was there details as to their accuracy? Could their accuracy be affected by the child's condition? To what level did they deem the pain? Did the child experience any neurological patterns that could be associated with comfort or happiness when in his parents company?

these are the two paragraphs from the GOSH statement that also changed my mind on this;

"At the first hearing in Charlie's case in March, GOSH's position was that every day that passed was a day that was not in his best interests. That remains its view of his welfare. Even now, Charlie shows physical responses to stressors that some of those treating him interpret as pain and when two international experts assessed him last week, they believed that they elicited a pain response.

"In GOSH's view there has been no real change in Charlie's responsiveness since January. Its fear that his continued existence has been painful to him has been compounded by the Judge's finding, in April, that since his brain became affected by RRM2B [his genetic disease] , Charlie's has been an existence devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering."

If the poor wee mite was suffering every day then GOSH and the Judge in question were right considering the US Doctor had no clinical evidence that this procedure he was proposing would be of any benefit to Charlie.
The parents were obviously clinging onto any hope they could and that's normal, but the arsehole of a US doctor who was feeding them this crap even though he hadn't bother to look over Charlies Clinical notes needs reprimanded in some way. He put the parents and the poor kid through even more suffering.

And he was benefiting financially from the drug company. The judge pointed out that he would allow him or the drug company to use the child for experimentation especially when it would prolong his pain and most likely increase it. Also to blame are the Pope, Vatican hospital chief, Trump, Farage, self appointed family spokesman and US pastor who pushed in. All increasing the pressure on the parents.

[theskull1]

Anybody who still feels the need to donate to the fundraising campaign can still do so at.

https://www.gofundme.com/please-help-to-save-charlies-life

Anyone know what happens to fund raising monies collected like this. Can is simply be trousered or does every penny need to be passed onto a registered charity?

[Minder]

Anybody who still feels the need to donate to the fundraising campaign can still do so at.

https://www.gofundme.com/please-help-to-save-charlies-life

Anyone know what happens to fund raising monies collected like this. Can is simply be trousered or does every penny need to be passed onto a registered charity?

Always wondered that myself

[Puckoon]

David Feherty's eldest son. 29 - overdose on his birthday.

[Orior]

David Feherty's eldest son. 29 - overdose on his birthday.

Just awful.

[BennyCake]

David Feherty's eldest son. 29 - overdose on his birthday.

Who's David Feherty?

[omaghjoe]

For those who refuse to read the details of the case and continue to demand an answer to the question of "why was he refused treatment?", consider this.

The treatment the American doctor was proposing, and would have gone ahead with if allowed, had never been tested for the specific genetic mutation of Charlie's disease, which affected both both his muscles and brain. Not even on mice. It wouldn't have been treatment, it would have been a science experiment. One the treating physician would have a financial interest in.

I assume the parents logic was  if the child is going to die anyway, is this not worth a punt? What was there to lose?

The biggest issue was the apparent pain being suffered by the child, registered by diagnosis but not registered physically by the child's responses which were removed by his condition. Appears to be like a patient with locked in syndrome experiencing pain but not able to show it.

Is this is crux? What does that mean exactly? I took it that there is pain associated with the condition?
Was there also neurological scans associated with pain?

Apologies for questions there is too much garbage online, and the articles posted spend most of their inches talking about Nial Farange and the like.

According to the medics they were able to diagnose that little Charlie was experiencing pain as a result of the breakdown at a cellular level, this would been via scans, etc.  It was on this evidence presented to the judge that he decided that prolonging the child's life via artificial ventilation was also prolonging his agony and he should be allowed to pass away as a result of his condition as soon as possible. The parents wanted more time with their child but acting in the child's best interest the judge ordered that the life support should be turned off as soon as Charlie was transferred to the hospice requested by the parents. It would appear that the child died almost immediately.

I hate to bug you Owen but Im struggling with the bold bit and I cant really find anything on-line. Your the best source of information i've uncovered on this...so apologies but im gonna have to ask....

What exactly were the tests that the doctors interpreted as suffering? Where they neurological? Was there details as to their accuracy? Could their accuracy be affected by the child's condition? To what level did they deem the pain? Did the child experience any neurological patterns that could be associated with comfort or happiness when in his parents company?

these are the two paragraphs from the GOSH statement that also changed my mind on this;

"At the first hearing in Charlie's case in March, GOSH's position was that every day that passed was a day that was not in his best interests. That remains its view of his welfare. Even now, Charlie shows physical responses to stressors that some of those treating him interpret as pain and when two international experts assessed him last week, they believed that they elicited a pain response.

"In GOSH's view there has been no real change in Charlie's responsiveness since January. Its fear that his continued existence has been painful to him has been compounded by the Judge's finding, in April, that since his brain became affected by RRM2B [his genetic disease] , Charlie's has been an existence devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering."

If the poor wee mite was suffering every day then GOSH and the Judge in question were right considering the US Doctor had no clinical evidence that this procedure he was proposing would be of any benefit to Charlie.
The parents were obviously clinging onto any hope they could and that's normal, but the arsehole of a US doctor who was feeding them this crap even though he hadn't bother to look over Charlies Clinical notes needs reprimanded in some way. He put the parents and the poor kid through even more suffering.

And he was benefiting financially from the drug company. The judge pointed out that he would allow him or the drug company to use the child for experimentation especially when it would prolong his pain and most likely increase it. Also to blame are the Pope, Vatican hospital chief, Trump, Farage, self appointed family spokesman and US pastor who pushed in. All increasing the pressure on the parents.

Lads I dont know where you got your information from but a quick skim of these court records says there was no direct evidence that the child was in pain, the assumption that he was seemed to be based on the doctors' belief which is turn based on the discomfort the ventilator causes. Im not sure who or when introduced the term suffering but its a loaded term in this context.

It was also unknown whether the "treatment" in America would induce pain.

Alot of the decisions taken by the guardian and courts seem to stem from the medical opinion on pain, probably legally bound to do so in fairness.
However they were also supposed to take into account the childs experience of pleasure and will to live. There seems to be no evidence of this either but if you apply the same deductive reasoning that formed medical opinion you would imagine the child takes pleasure from his mothers touch and sight. The child's will to live would be pretty strong too as you'd imagine, doesn't seem like these were considered either.

The American doc didn't come off great however in regards his vested interests that how much of the medical industry works in America. Speaking of vested interest the QC for the guardian has an interesting background too.
https://compassionindying.org.uk/trustees/

Anyway thats all fairly irrelevant to the case which is evidently not near as simple as a lot of you were making it out by stating as fact, that the child was "suffering" needlessly, which is nowhere near certainly the case.