Discussion
KTF said:
I noticed he had taken down the email that was sent to them.
Based on this - http://www.bbc.co.uk/news/uk-england-40733491 - would guess that they want the extra week so he reaches his first birthday (or maybe they just want a week of quiet after all they have been through, even if they brought it on themselves).
I can see why they want to do this but, if he is in constant pain as GOSH suggest, that's not fair on the child.
We went through something similar in May. It's always important to put the child's interests first. Whilst there's a chance to save your child then a small amount of pain during the course of treatment such as blood tests and inserting drips can be beared when you look at the bigger picture. Based on this - http://www.bbc.co.uk/news/uk-england-40733491 - would guess that they want the extra week so he reaches his first birthday (or maybe they just want a week of quiet after all they have been through, even if they brought it on themselves).
I can see why they want to do this but, if he is in constant pain as GOSH suggest, that's not fair on the child.
But as soon as the chances for your are gone then all that the baby needs is nutrition, enough meds to make them comfortable and a whole lot of love.
From their homepage:
"Charlie had a real chance of getting better. It’s now unfortunately too late for him but it’s not too late for others with this horrible disease and other diseases. We will continue to help and support families of ill children and try and make Charlie live on in the lives of others. We owe it to him to not let his life be in vain."
So, looks like they'll set up a foundation in his name or similar, to help other kids with either this disease or other diseases yet to be decided.
"Charlie had a real chance of getting better. It’s now unfortunately too late for him but it’s not too late for others with this horrible disease and other diseases. We will continue to help and support families of ill children and try and make Charlie live on in the lives of others. We owe it to him to not let his life be in vain."
So, looks like they'll set up a foundation in his name or similar, to help other kids with either this disease or other diseases yet to be decided.
I've had 2 children go into GOSH and just one came out. My best friend's daughter died of leukaemia in there shortly after.
Children die all the time. It's tragic, but most parents - from all walks of life - accept medical expert advice, internalise the grief, deal with it, and hope to find a way out maintaining as much dignity as possible. Usually with minimal public interfacing. I can tell you that the only consideration that GOSH will have given will have been towards the absolute best interests of the patient. Nothing else is a factor.
Unfortunately, the parents have been offered hope where there is none, and have decided that they - and a foreign professor who hadn't even read the case notes - know better than medical experts treating their child. It's a great shame that it should have got to this point and my heart goes out to the staff of GOSH and parents of other children currently in there, who have to deal with a s
tstorm of uneducated opinion whipped up by the ignorant for self-aggrandisement.
Children die all the time. It's tragic, but most parents - from all walks of life - accept medical expert advice, internalise the grief, deal with it, and hope to find a way out maintaining as much dignity as possible. Usually with minimal public interfacing. I can tell you that the only consideration that GOSH will have given will have been towards the absolute best interests of the patient. Nothing else is a factor.
Unfortunately, the parents have been offered hope where there is none, and have decided that they - and a foreign professor who hadn't even read the case notes - know better than medical experts treating their child. It's a great shame that it should have got to this point and my heart goes out to the staff of GOSH and parents of other children currently in there, who have to deal with a s
tstorm of uneducated opinion whipped up by the ignorant for self-aggrandisement.Slaav said:
I think the mumsnet poster was trying to give the impression they were actually a clinician? What did you think? Sorry, can't face trawling through it again to find the post....
I tend to avoid making wild assumptions, but I certainly got the nurses vibe from a good few of them. Mainly the 'I know what I'm talking about, I'm a nurse' sort of vibe. Believe me, nurses don't know as much as they'd like you to think they believe, they certainly haven't done 7 years clinical training. Nurses think they're doctors, and they're not; doctors think they're consultants and they're not; consultants think they're God....I've had a good look through the mumsnet threads this evening and after happily discussing my gender and possible occupation then wilfully debunked my posts because it was mansplaining and promptly failed to offer any credible alternatives to what I had posted. Which frankly is poor showing.
The issues that have arisen have long since passed what regular clinicians were able to deal with. It might surprise people, but doctors only have limited knowledge, even the specialists. Your average GP will know what they can treat and what needs further investigation, they're expected to know about such a wide spectrum of medicine they end up knowing less and less about more and more till they know nothing about everything; a consultant focusses his knowledge to know more and more about less and less till they know everything about nothing (not my quote, from a former student now training as a GP who remembers my wacky zany teaching methods).
That is why there are specialists out there, clinicians who devote their lives to researching more and more specific areas of medicine like mitochondrial disease but even they have limits. We reached the point where a therapy was proposed but no testing had ever occurred, no mice had been tested on. So even the experts had reached the point at which they would have said 'I don't know'. As an academic, researcher and lecturer, the best I could do was formulate a hypothesis based upon current knowledge, state and defend that opinion based upon current research. But this is what I do as a day job. I teach new students who are out of their depth a subject that is important, and do it in a way they can understand. It's a skill. One I have in bucket loads - take a complex subject, break it down and mansplain it in a way that people can understand, including visualisation exercises so students can see in their minds eye a complex biochemical reaction.
The salad leaves comment almost certainly came from a nurse/clinician who seemed to think I had no clue how a diuretic works. Well I do, but the difference between myself and a nurse is that I can work out how a diuretic will work in a patient with crappy mitochondria. Hence the difference in opinions.
People are entitled to their opinions, and discuss things rationally. To hijack my comments and debunk them without offering any alternatives is a piss poor show and by the looks of things, the Mumsnet mods have dealt with it very well. There's certainly a lot of removed posts, coupled with the 'heavily debunked' comment and the message from the mod asking not to discuss someone who is not on the forum as it's just not cricket did leave me wondering. But I won't lose any sleep over it. We're clearly moving towards a "trollocracy" where the less you know puts you in a more elevated position within a social hierarchy.
I notice that the latest charlie gard thread on mumsnet has been removed.
I had a rather heated conversation with my own Mum about this at the latter part of last week. We didn't even get to the stage where I could show her your excellent explanations Wiccy, as she was resolute in her judgement that parents know best above all else and would not budge from that point. She's 65, one of the most caring people I know, but even I was shocked as to her standing and refusal to accept anything approaching logical reason.
I don't get how anyone, especially a parent, could want their children to suffer when any realistic hope was lost months ago. I don't think GOSH is immaculately perfect in all things at all times, but in this case I truly believe they've been beyond reproach.
I don't get how anyone, especially a parent, could want their children to suffer when any realistic hope was lost months ago. I don't think GOSH is immaculately perfect in all things at all times, but in this case I truly believe they've been beyond reproach.
Wiccan of Darkness said:
Slaav said:
I think the mumsnet poster was trying to give the impression they were actually a clinician? What did you think? Sorry, can't face trawling through it again to find the post....
I tend to avoid making wild assumptions, but I certainly got the nurses vibe from a good few of them. Mainly the 'I know what I'm talking about, I'm a nurse' sort of vibe. Believe me, nurses don't know as much as they'd like you to think they believe, they certainly haven't done 7 years clinical training. Nurses think they're doctors, and they're not; doctors think they're consultants and they're not; consultants think they're God....I've had a good look through the mumsnet threads this evening and after happily discussing my gender and possible occupation then wilfully debunked my posts because it was mansplaining and promptly failed to offer any credible alternatives to what I had posted. Which frankly is poor showing.
The issues that have arisen have long since passed what regular clinicians were able to deal with. It might surprise people, but doctors only have limited knowledge, even the specialists. Your average GP will know what they can treat and what needs further investigation, they're expected to know about such a wide spectrum of medicine they end up knowing less and less about more and more till they know nothing about everything; a consultant focusses his knowledge to know more and more about less and less till they know everything about nothing (not my quote, from a former student now training as a GP who remembers my wacky zany teaching methods).
That is why there are specialists out there, clinicians who devote their lives to researching more and more specific areas of medicine like mitochondrial disease but even they have limits. We reached the point where a therapy was proposed but no testing had ever occurred, no mice had been tested on. So even the experts had reached the point at which they would have said 'I don't know'. As an academic, researcher and lecturer, the best I could do was formulate a hypothesis based upon current knowledge, state and defend that opinion based upon current research. But this is what I do as a day job. I teach new students who are out of their depth a subject that is important, and do it in a way they can understand. It's a skill. One I have in bucket loads - take a complex subject, break it down and mansplain it in a way that people can understand, including visualisation exercises so students can see in their minds eye a complex biochemical reaction.
The salad leaves comment almost certainly came from a nurse/clinician who seemed to think I had no clue how a diuretic works. Well I do, but the difference between myself and a nurse is that I can work out how a diuretic will work in a patient with crappy mitochondria. Hence the difference in opinions.
People are entitled to their opinions, and discuss things rationally. To hijack my comments and debunk them without offering any alternatives is a piss poor show and by the looks of things, the Mumsnet mods have dealt with it very well. There's certainly a lot of removed posts, coupled with the 'heavily debunked' comment and the message from the mod asking not to discuss someone who is not on the forum as it's just not cricket did leave me wondering. But I won't lose any sleep over it. We're clearly moving towards a "trollocracy" where the less you know puts you in a more elevated position within a social hierarchy.
I notice that the latest charlie gard thread on mumsnet has been removed.
I do wonder what makes sheople go out of their way on the internet to do this. Then having said that, many topics often seem to have armchair experts shouting down true knowledge? It happens all the time in S, P & L, as well as the finance forum, esp re Pensions!
I think you have shown impressive restraint and it must be a trait of tutors in HE! My own Prof of Biochemistry showed an amazing degree of patience with me and a few other less than gifted students! A certain Prof Malcolm??
Thanks anyway as I said in my email.
carl_w said:
hairykrishna said:
Their website encourages bank transfers to avoid gofundme and paypal fees;
http://www.charliesfight.org/
They've raised ~£1,3m on gofundme. Who knows how much directly into their account.The classy move would be to donate the lot directly to GOSH.
They could done the £1.3m and keep some or all of the directly-transferred money and no-one would be any the wiser. http://www.charliesfight.org/
They've raised ~£1,3m on gofundme. Who knows how much directly into their account.The classy move would be to donate the lot directly to GOSH.
As mentioned, the right thing would be to donate ALL the case to GOSH. Whether that will happen or the money will ever be seen again, is down to the integrity of the parents.
PhilboSE said:
I've had 2 children go into GOSH and just one came out. My best friend's daughter died of leukaemia in there shortly after.
I haven't quoted all your post for brevity but I wanted to say thank you for that post. I hope never to be in your position but, if I ever am, I also hope I can cope with it with as much dignity and understanding. 
Henners said:
I expect that once the poor child is no longer around, they will be on This Morning and the like - keeping a profile.
As mentioned, the right thing would be to donate ALL the case to GOSH. Whether that will happen or the money will ever be seen again, is down to the integrity of the parents.
The entire exercise is feeling like cynical attempt to justify keeping the money for themselves.As mentioned, the right thing would be to donate ALL the case to GOSH. Whether that will happen or the money will ever be seen again, is down to the integrity of the parents.
Listening to the radio on the way to work this morning there was a mother recounting the time when she let her terminally ill daughter go. As I listened it was clear that she and her other children had been prepared for this and when the time came, knew it was for the best.
I feel for the parents of Charlie. They have denied themselves the time and thought to prepare, having been sold false hope of a different outcome. They are having to forget all that has gone, forget beliefs, and prepare, in a compressed time frame and all in the public eye. They dropped the case. They agreed to hospice care. Through their actions they are now having to rush what shouldn't be. They have brought this on themselves, misguided by the snake oil (and malpractice) of the Columbia doctor.
Their words, if any, and actions in a couple of weeks' time will be telling.
I hope they find peace.
I feel for the parents of Charlie. They have denied themselves the time and thought to prepare, having been sold false hope of a different outcome. They are having to forget all that has gone, forget beliefs, and prepare, in a compressed time frame and all in the public eye. They dropped the case. They agreed to hospice care. Through their actions they are now having to rush what shouldn't be. They have brought this on themselves, misguided by the snake oil (and malpractice) of the Columbia doctor.
Their words, if any, and actions in a couple of weeks' time will be telling.
I hope they find peace.
Edited by V8LM on Thursday 27th July 09:42
V8LM said:
Listening to the radio on the way to work this morning there was a mother recounting the time when she let her terminally ill daughter go. As I listened it was clear that she and her other children had been prepared for this and when the time came, knew it was for the best.
I feel for the parents of Charlie. They have denied themselves the time and thought to prepare, having been sold false hope of a different outcome. They are having to forget all that has gone, forget beliefs, and prepare, in a compressed time frame and all in the public eye. They dropped the case. They agreed to hospice care. Through their actions they are now having to rush what shouldn't be. They have bought this on themselves, misguided by the snake oil (and malpractice) of the Columbia doctor.
Their words, if any, and actions in a couple of weeks' time will be telling.
I hope they find peace.
I haven't been following this too closely (for the sake of my stomach), but I thought they were fighting the hospice thing? Well, until the Judge made his decision yesterday and said there would be no further hearings - effectively telling them it was over. I feel for the parents of Charlie. They have denied themselves the time and thought to prepare, having been sold false hope of a different outcome. They are having to forget all that has gone, forget beliefs, and prepare, in a compressed time frame and all in the public eye. They dropped the case. They agreed to hospice care. Through their actions they are now having to rush what shouldn't be. They have bought this on themselves, misguided by the snake oil (and malpractice) of the Columbia doctor.
Their words, if any, and actions in a couple of weeks' time will be telling.
I hope they find peace.
This whole affair is a sad illustration of the way the world and the West in particular is going. Thanks to social media dim but often well-meaning people seem to have the power to whip up almost unstoppable momentum on an issue despite the real facts of the matter.
The average person isn't wonderfully bright and 50% are dimmer than that. Unfortunately they tend to shout the loudest and ignore anything that refutes their belief.
Welcome to the Age of Stupid. Coming to a ballot box near you.
The average person isn't wonderfully bright and 50% are dimmer than that. Unfortunately they tend to shout the loudest and ignore anything that refutes their belief.
Welcome to the Age of Stupid. Coming to a ballot box near you.
rovermorris999 said:
The average person isn't wonderfully bright and 50% are dimmer than that. Unfortunately they tend to shout the loudest and ignore anything that refutes their belief.
Welcome to the Age of Stupid. Coming to a ballot box near you.
Spot on. The level of stupid witnessed on the likes of Facebook is horrifying. The idiocracy is here.Welcome to the Age of Stupid. Coming to a ballot box near you.
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