Discussion
It really is a tragic situation for all involved. The mother said today that "he's not in pain and suffering, and I promise everyone I would not sit there and watch my son in pain and suffering, I couldn't do it." Yet the medical team say that delaying the move from active to palliative care will continue to cause Charlie significant harm.
The longer this goes on, and so publicly, the more cynical I become of the motives behind it, sadly. If they return the cash, or donate it all and go back to their regular lives, I will "eat my cynicism", but if they start running a charity themselves and living off these good faith donations, it wont look good.
And in the background, this poor kid, who can lead no life of any real quality, seems to only have the professionalism of GOSH medics behind him.
it's well past his time now, poor lad.
And in the background, this poor kid, who can lead no life of any real quality, seems to only have the professionalism of GOSH medics behind him.
it's well past his time now, poor lad.
poo at Paul's said:
The longer this goes on, and so publicly, the more cynical I become of the motives behind it, sadly. If they return the cash, or donate it all and go back to their regular lives, I will "eat my cynicism", but if they start running a charity themselves and living off these good faith donations, it wont look good.
And in the background, this poor kid, who can lead no life of any real quality, seems to only have the professionalism of GOSH medics behind him.
it's well past his time now, poor lad.
charity? they're skipping that step at the moment, and just asking people to do direct bank transfers to them (see http://www.charliesfight.org/#donate).And in the background, this poor kid, who can lead no life of any real quality, seems to only have the professionalism of GOSH medics behind him.
it's well past his time now, poor lad.
I have been thinking about this story a lot in the last few days, and hadn't spotted this thread until now to air some thoughts. I have also been discussing it with my other half as I wasn't sure if my (our) experience was over-ruling my normally fairly sensible mind.
A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
jke11y said:
I have been thinking about this story a lot in the last few days, and hadn't spotted this thread until now to air some thoughts. I have also been discussing it with my other half as I wasn't sure if my (our) experience was over-ruling my normally fairly sensible mind.
A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
Makes perfect sense, mate. Sorry for your loss, too, cant be easy. A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
jke11y said:
I have been thinking about this story a lot in the last few days, and hadn't spotted this thread until now to air some thoughts. I have also been discussing it with my other half as I wasn't sure if my (our) experience was over-ruling my normally fairly sensible mind.
A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
jke11y said:
I have been thinking about this story a lot in the last few days, and hadn't spotted this thread until now to air some thoughts. I have also been discussing it with my other half as I wasn't sure if my (our) experience was over-ruling my normally fairly sensible mind.
A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
Not only does it make sense, it actually makes far more sense than the President of the United States comments on the matter. And far more sense than the Vatican's position. A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
tholes then they can afford to try and keep a child alive no matter what the cost, it should be irrelevant. However I agree its no life if you are a vegetable.kev1974 said:
charity? they're skipping that step at the moment, and just asking people to do direct bank transfers to them (see http://www.charliesfight.org/#donate).
Quids in then! Short Grain said:
American Hospital offering to send experimental drugs to the hospital. No guarantee they will work but good on them for the offer, even if, to me, it's misguided. No mention of any cost for these.
Thing is, even if these drugs extend Charlie's life, what sort of existence can he have. Blind, Deaf, can't breathe without a machine!! The Mother claims he's not in discomfort, how can she guarantee that 100% when he can't express himself in any way? Not having a 'nasty' go at the mother, any mother's instinct is to protect, but surely at some point she has to 'Let Him Go'
I know I wouldn't want to live a life in darkness and silence with no way to express myself!!
It's incredibly sad but Trump, The Pope et al are giving false hope when there needs to be a reality check!
It must be incredibly sad for the parents, indeed any parents in this situation. However there comes a point when there is no point. The chap in America saying his child was "saved", with a picture some poor little soul in a wheelchair, clearly unable to communicate or move. That's no life for anyone. The kindest thing they can do is let GOSH make him as comfortable as possible, and let him slip away with dignity. It also slightly disgusts me how GOSH are being "attacked" in all this. Thing is, even if these drugs extend Charlie's life, what sort of existence can he have. Blind, Deaf, can't breathe without a machine!! The Mother claims he's not in discomfort, how can she guarantee that 100% when he can't express himself in any way? Not having a 'nasty' go at the mother, any mother's instinct is to protect, but surely at some point she has to 'Let Him Go'
I know I wouldn't want to live a life in darkness and silence with no way to express myself!!
It's incredibly sad but Trump, The Pope et al are giving false hope when there needs to be a reality check!
FN2TypeR said:
kev1974 said:
charity? they're skipping that step at the moment, and just asking people to do direct bank transfers to them (see http://www.charliesfight.org/#donate).
Quids in then! TwigtheWonderkid said:
jke11y said:
I have been thinking about this story a lot in the last few days, and hadn't spotted this thread until now to air some thoughts. I have also been discussing it with my other half as I wasn't sure if my (our) experience was over-ruling my normally fairly sensible mind.
A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
Not only does it make sense, it actually makes far more sense than the President of the United States comments on the matter. And far more sense than the Vatican's position. A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
Jke, succinct but powerful post. I cant begin to imagine what you went through.
jke11y said:
I have been thinking about this story a lot in the last few days, and hadn't spotted this thread until now to air some thoughts. I have also been discussing it with my other half as I wasn't sure if my (our) experience was over-ruling my normally fairly sensible mind.
A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
To echo others; very sensible, levelheaded post. Sorry for your loss, can't even begin to imagine how it must feel.A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan). The care he received in GOSH was incredible, and the knowledge and skill that everyone we dealt with displayed still is in my thoughts every day.
We could have gone elsewhere for therapies/treatment/snakeoil (delete as you feel appropriate) that may have prolonged his life by days or weeks, but the absolute last thing that would have entered my mind would be to channel the little time we had in the direction these parents are displaying. A poster earlier quoted the mother as saying she didn't want him in pain, I felt exactly the same; any parent would - but surely anyone would take medical advice of a babies probable level of discomfort over their own desire to simply keep the child alive?
One thing I did come across a couple of times during the time we spent in hospital was a scumbag parent giving it the whole "she's my princess mate my little girl" mixed with aggression toward the medical staff. I don't even know what their situation was but it couldnt be any worse than mine at the time. I guess that whilst these things have every chance of happening to a level headed and intelligent person they also happen to people who are stupid, and these people are already pre-disposed to react in stupid ways. Add in more emotion than most people have ever experienced and you can see how situations escalate.
Apologies for the ramble if it doesn't make sense.
There is an interesting Wikipedia article about the Rome hospital involved in this move.
https://en.m.wikipedia.org/wiki/Bambino_Gesù_...
Also, the British Catholic press is getting quite heated about the case.
http://catholicherald.co.uk/commentandblogs/2017/0...
This is just one example. I have not read any reference what, if any, religion the Gard parents follow, but is there not a whiff of incense in the air?
https://en.m.wikipedia.org/wiki/Bambino_Gesù_...
Also, the British Catholic press is getting quite heated about the case.
http://catholicherald.co.uk/commentandblogs/2017/0...
This is just one example. I have not read any reference what, if any, religion the Gard parents follow, but is there not a whiff of incense in the air?
4x4Tyke said:
Unpublished research on mice and tissue samples is a long way short of even experimental treatment.
Indeed. But what an opportunity for the drugs company to gather data while testing on a human. /cynical/In the meantime, GOSH have applied for a new hearing in light of this drugs offer. BBC link
BlackLabel said:
I think it's a bit unfair to insinuate that this is all about money. They are just desperate parents who are blinded by their love for their sick child. And it seems they are being told a lot of half truths from so called experts in America.
We are saying we hope it is not, but an awful lot of money has bene donated for a trip / treatment that was seemingly never a possibility. So insinuations being fair or not, it's always going to be a nagging doubt. There have been other higher profile cases with large cash donations provided for one purpose, and money spent on other things, we all know that.
jke11y said:
A little under three years ago, I spent 2.5 weeks in GOSH with my first son; eventually he was diagnosed with a rare and terminal genetic disorder (Type1SMA for Wiccan).
Again, if there's any information you want, feel free to PM/email me. Did GOSH or your GP refer you to a genetic counselor, if not bug the GP.
I cannot see what this new "experimental treatment" can possibly be, other than a different formula of nutrients. But I heard Charlies mum talking earlier today and she seems quite upbeat that with the right treatment Charlie has every chance of making a full and complete recovery and be able to live a perfectly normal, happy life.
It left me speechless. I feel as though the parents are postponing the inevitable and thus prolonging their own pain; I also wonder what further support GOSH are offering the parents, this god awful situation is dragging on. The current damage cannot be reversed, and it's personally frustrating to hear people use phrases like miracle life saving treatment when I know very well that it won't be life-saving, it will be death-delaying.
More legal appeals are imho the worst thing to happen right now. The media circus surrounding this has turned this into something resembling a victorian freak show at a travelling fair. It's angering me a lot, right now, as the miracle people have been praying for has materialised insofar as a situation that couldn't possibly get worse, has just got worse.
Oh and FWIW a completely untested drug, therapy or course of treatment that hasn't been performed on mice, and as such has not undergone phase I trials cannot legally be offered or given to Charlie, so goodness knows who got it in their heads there was another option.
Wonder how much money has been wasted in legal fees throughout all of this. Not to mention the time it's cost doctors and nurses to write reports, give evidence etc - time they could have spent treating sick kids.
And back to the court they go.....
https://www.theguardian.com/uk-news/2017/jul/07/ch...
And back to the court they go.....
https://www.theguardian.com/uk-news/2017/jul/07/ch...
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