Discussion
GCH said:
pidsy said:
Breaking news - Charlie is now a US citizen.
No he hasn't been granted US citizenship.He - and interestingly, also his parents - is now entitled to become a lawful permanent resident upon application or adjustment of status following entry, after the bill passed yesterday.
There is however, a world of difference between being a permanent resident and a citizen.
He has certain rights in the US upon application and issuance, but none that I can see would make any difference to his predicament at the current time, and certainly not that would over-ride the UK courts decision.
They're now claiming he has residence in the US, so he can fly there and get "world class treatment".
That is absolutely despicable wording - he has already had the finest treatment available; american healthcare "professionals" are happily taking money from the parents and will happily give nothing more than helpful words.
Wiccan of Darkness said:
ModernAndy said:
ALawson said:
Could the treatment effectively accelerate the rate ATP is used up by the body?
Wiccan will be along to answer this properly but I believe this is what he said would most likely happen in an earlier post.Further bits of his condition are being released daily as the case goes on, and in the last few days it has been confirmed that Charlies EEG readings show dramatic variations in electrical activity within the brain. That's hardly surprising considering the number of synaptic connections that have fried, all the wiring in the brain is short circuiting. In laymans terms that manifests itself as epilepsy, and a report from yesterday suggested this is happening in regular cycles, roughly every 20 minutes. Since his muscles basically don't work, the seizures can only be detected via EEG readings. But that's not to say residual electrical impulses continue and remain within the tissues, causing twitching. Charlies parents say he responds to stimuli; I suspect these responses are residual electrical stimuli causing random twitching.
It was also revealed today that the doctor from the US is to review Charlies medical notes for the first time today, having claimed the treatment has 10% chance of success (which has been translated as a 10% chance of improvement in condition (false) and then a 10% chance of a total cure, ffs) he has never reviewed the patient notes.
To make public a claim of success without reviewing patient notes is a pretty big breach of medical protocol. Judgement is in 8 days time.
Meanwhile, by all means link these posts to the wider social media, as a few have commented the likes of facebook and twitter seem to be populated by the great illiterati.
I've often said that human ingenuity is limited only by human imagination and the laws of physics; human stupidity, however, suffers none of these limitations.
Again, thank you to those who have PM'd their support. Makes it worthwhile.
I may have missed it but as I understand it Charlie is the way he is because of his parent's genetic makeup and I was curious if this means that any further children would suffer the same. Could that be a reason why they are fighting so hard?
Blue Cat said:
Thank you for posting all this information, it is very clear and interesting.
I may have missed it but as I understand it Charlie is the way he is because of his parent's genetic makeup and I was curious if this means that any further children would suffer the same. Could that be a reason why they are fighting so hard?
They face the same ongoing situation as my wife and I; a 1 in 4 chance of a future child being affected as has happened in this case, or a 1 in 2 chance of the child carrying the gene - and finally a 1 in 4 chance of the future child being completely unaffected. I may have missed it but as I understand it Charlie is the way he is because of his parent's genetic makeup and I was curious if this means that any further children would suffer the same. Could that be a reason why they are fighting so hard?
Blue Cat said:
Wiccan of Darkness said:
ModernAndy said:
ALawson said:
Could the treatment effectively accelerate the rate ATP is used up by the body?
Wiccan will be along to answer this properly but I believe this is what he said would most likely happen in an earlier post.Further bits of his condition are being released daily as the case goes on, and in the last few days it has been confirmed that Charlies EEG readings show dramatic variations in electrical activity within the brain. That's hardly surprising considering the number of synaptic connections that have fried, all the wiring in the brain is short circuiting. In laymans terms that manifests itself as epilepsy, and a report from yesterday suggested this is happening in regular cycles, roughly every 20 minutes. Since his muscles basically don't work, the seizures can only be detected via EEG readings. But that's not to say residual electrical impulses continue and remain within the tissues, causing twitching. Charlies parents say he responds to stimuli; I suspect these responses are residual electrical stimuli causing random twitching.
It was also revealed today that the doctor from the US is to review Charlies medical notes for the first time today, having claimed the treatment has 10% chance of success (which has been translated as a 10% chance of improvement in condition (false) and then a 10% chance of a total cure, ffs) he has never reviewed the patient notes.
To make public a claim of success without reviewing patient notes is a pretty big breach of medical protocol. Judgement is in 8 days time.
Meanwhile, by all means link these posts to the wider social media, as a few have commented the likes of facebook and twitter seem to be populated by the great illiterati.
I've often said that human ingenuity is limited only by human imagination and the laws of physics; human stupidity, however, suffers none of these limitations.
Again, thank you to those who have PM'd their support. Makes it worthwhile.
I may have missed it but as I understand it Charlie is the way he is because of his parent's genetic makeup and I was curious if this means that any further children would suffer the same. Could that be a reason why they are fighting so hard?
I remember a mate years back who had relationships fail due to the likelihood of any children development sickle cell anemia - he actually had tests performed and the chances were very high. His brother had died of the disease, he couldn't/wouldn't risk passing it on.
If you knew there was a good chance of your child developing a fatal illness, would you go ahead and attempt to conceive?
But my basic understanding of Charlies condition, I really can't see how this "treatment" (aka snake oil?) could have any meaningful difference on another child.
TwigtheWonderkid said:
pidsy said:
Breaking news - Charlie is now a US citizen.
Can we deport him. Let the US taxpayer fork out for years to come, and let GOSH get on with the business of doing their best for the sick children of appreciative parents. clonmult said:
That would depend on the chances of a second child having the same makeup.
I remember a mate years back who had relationships fail due to the likelihood of any children development sickle cell anemia - he actually had tests performed and the chances were very high. His brother had died of the disease, he couldn't/wouldn't risk passing it on.
If you knew there was a good chance of your child developing a fatal illness, would you go ahead and attempt to conceive?
But my basic understanding of Charlies condition, I really can't see how this "treatment" (aka snake oil?) could have any meaningful difference on another child.
Our situation first reared its ugly head in 2014. With our second child, a CVS (a pretty horrible procedure to watch, never mind endure) was the only way to check if he was affected the same way as our first child. I remember a mate years back who had relationships fail due to the likelihood of any children development sickle cell anemia - he actually had tests performed and the chances were very high. His brother had died of the disease, he couldn't/wouldn't risk passing it on.
If you knew there was a good chance of your child developing a fatal illness, would you go ahead and attempt to conceive?
But my basic understanding of Charlies condition, I really can't see how this "treatment" (aka snake oil?) could have any meaningful difference on another child.
Now, they can do a maternal blood test at 8 or 10 weeks (I forget which) which can determine if the unborn child is afffected. Incredible. I don't know how many genetic conditions this applies to, but it highlights the speed at which the medical advances are made.
The problems come when one parent will not agree to the testing on religious or belief grounds, or won't make the choice to terminate the pregnancy upon knowing the result of the test. I know one couple who weren't prepared to go through it, and it ultimately led to their divorce.
jke11y said:
They face the same ongoing situation as my wife and I; a 1 in 4 chance of a future child being affected as has happened in this case, or a 1 in 2 chance of the child carrying the gene - and finally a 1 in 4 chance of the future child being completely unaffected.
Blimey - that's a tough call to make.Because of the medication my Mrs is on, we had to go for a nuchal scan & that was worrying enough.
Both of Charlies parents carry a recessive gene. The media is partly correct in the probability being extremely long odds, but those odds are the probability of two people with the recessive gene hooking up and conceiving.
Above posts are correct although I did mention earlier, that the chances of Charlies parents having another child with the same condition is 1 in 4. It's a 50/50 chance their future children carry the recessive gene.
I've kept one eye on proceedings from across the pond and it's absolutely disgusting hearing the crap spouted by the yanks, it's so obvious that all they have in mind is the £1.3 million fighting fund.
I'm getting to the point where I think we should send Charlie to the USA, and then when he does inevitably die, we can unleash social media hell asking what they did with the £1m, why they lied and said they could save him etc etc etc.
This has political s
t storm written all over it. That aside, the thing that has disturbed me the most is how decisions can be influenced by the wave of uninformed public opinion.
How are other PH'ers getting on releasing the information I have provided, and the responses from the great illiterati? I'm guessing factual information is completely irrelevant and people are being shot down in flames.
Above posts are correct although I did mention earlier, that the chances of Charlies parents having another child with the same condition is 1 in 4. It's a 50/50 chance their future children carry the recessive gene.
I've kept one eye on proceedings from across the pond and it's absolutely disgusting hearing the crap spouted by the yanks, it's so obvious that all they have in mind is the £1.3 million fighting fund.
I'm getting to the point where I think we should send Charlie to the USA, and then when he does inevitably die, we can unleash social media hell asking what they did with the £1m, why they lied and said they could save him etc etc etc.
This has political s
t storm written all over it. That aside, the thing that has disturbed me the most is how decisions can be influenced by the wave of uninformed public opinion.How are other PH'ers getting on releasing the information I have provided, and the responses from the great illiterati? I'm guessing factual information is completely irrelevant and people are being shot down in flames.
Dixy said:
The elephant in the room is how much this is costing the NHS for what is a know negative outcome. I think there should be a financial cut off point where only palliative care will be provided, it certainly would in the states.
That's the great irony. In the States, even if the family had insurance, cover would have been pulled ages ago and he would have been long since dead, without a murmur from anyone. And with no insurance, dead even sooner. And they have the brass neck to claim Charlie is being murdered by the state and this is what happens when you have socialised healthcare.Let them have Charlie, let him die in the USA, and then let's give them hell on social media for taking our children from us and killing them.
TwigtheWonderkid said:
That's the great irony. In the States, even if the family had insurance, cover would have been pulled ages ago and he would have been long since dead, without a murmur from anyone. And with no insurance, dead even sooner. And they have the brass neck to claim Charlie is being murdered by the state and this is what happens when you have socialised healthcare.
Yep....that is pretty much how the loons who are anti-healthcare reform are spinning it here. Wiccan of Darkness said:
This has political st storm written all over it. That aside, the thing that has disturbed me the most is how decisions can be influenced by the wave of uninformed public opinion.
How are other PH'ers getting on releasing the information I have provided, and the responses from the great illiterati? I'm guessing factual information is completely irrelevant and people are being shot down in flames.
Uninformed public opinion, which in turn is fed by the uninformed/twisted gutter press.t storm written all over it. That aside, the thing that has disturbed me the most is how decisions can be influenced by the wave of uninformed public opinion.How are other PH'ers getting on releasing the information I have provided, and the responses from the great illiterati? I'm guessing factual information is completely irrelevant and people are being shot down in flames.
Outside of PH and the Daily Mail comments sections I haven't seen any discussion of this - definitely not amongst those that I have on Facebook. Although I have been surprised by the comments on the mail - the most upvoted tend to be in agreement with GOSH.
poo at Paul's said:
Ah the mother has "stormed" out of court today. Clearly the ratings were waivering, (as evidenced by this thread being on page 4!LOL)
FFS, just a bunch of jokers now.
Their annoyance appears to relate to a MRI result being presented in court before they were advised by the doctors.FFS, just a bunch of jokers now.
Edited by PurpleMoonlight on Friday 21st July 19:07
BBC is also reporting that the judge has commented on protesters getting in the way of other parents trying to get in to hospital 
"Mr Justice Francis said the relatives of those children may not want to be confronted by campaigners."
Nothing stating what the protesters are doing specifically, but it's still terrible that they're not even bothering to think about other people any more. The hospital isn't just for Charlie, it's for other children too and their parents need support, not a bunch of angry people shouting and getting in the way.
"Mr Justice Francis said the relatives of those children may not want to be confronted by campaigners."
Nothing stating what the protesters are doing specifically, but it's still terrible that they're not even bothering to think about other people any more. The hospital isn't just for Charlie, it's for other children too and their parents need support, not a bunch of angry people shouting and getting in the way.
MentalSarcasm said:
BBC is also reporting that the judge has commented on protesters getting in the way of other parents trying to get in to hospital
"Mr Justice Francis said the relatives of those children may not want to be confronted by campaigners."
Nothing stating what the protesters are doing specifically, but it's still terrible that they're not even bothering to think about other people any more. The hospital isn't just for Charlie, it's for other children too and their parents need support, not a bunch of angry people shouting and getting in the way.
It's an unfortunate by-product of being a "little extreme", and in this case a lot "stupid", that there is no awareness of the negative impact you are having on other innocent parties."Mr Justice Francis said the relatives of those children may not want to be confronted by campaigners."
Nothing stating what the protesters are doing specifically, but it's still terrible that they're not even bothering to think about other people any more. The hospital isn't just for Charlie, it's for other children too and their parents need support, not a bunch of angry people shouting and getting in the way.
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