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Original poster

Charlie gard case thread 2

954 replies

Fancythat69 · 08/07/2017 20:22

The last thread is full, Not sure if another has been started.

Theres a CA rally at GOSH planned for tomorrow. What are these people on?

Charlie gard case thread 2
OP posts:
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16
LassWiTheDelicateAir · 09/07/2017 11:20

I comfort myself with the thought that he almost certainly has too little brain function left to actually be aware of anything. If there is pain it's only happening to the nerve endings, not getting through to any kind of consciousness. You really have to hope so

My thoughts too. This poor child can't see, hear, move or swallow but who knows if he can still feel pain. I'm finding it very difficult to sympathise with the parents.

LogicalPsycho · 09/07/2017 11:21

I can't understand why these 'we have a cure' and 'look at me i have the same condition and I'm well' are just coming out the woodwork now.

I've seen around a dozen people say "I have mitochondrial disease and survived- give Charlie a chance!"

There have only been 16 cases diagnosed in the world - Charlie is one of them.
And all of these people with MDDS have now waived their anonymity, don't suffer any debilitating setbacks, and have suddenly took up Twitter and Facebook in the last 2 months? Hmm

muckypup73 · 09/07/2017 11:24

LogicalPsycho, I read that there was 16 people that had it and they have all died. apart from Charlie obviously.

LassWiTheDelicateAir · 09/07/2017 11:24

The recent photos are awful.

LogicalPsycho · 09/07/2017 11:26

My thoughts too. This poor child can't see, hear, move or swallow but who knows if he can still feel pain. I'm finding it very difficult to sympathise with the parents.

I agree.
And when this treatment doesn't improve Charlie's quality of life one bit, just extends the time of death by a few months, what then? Will it have been worth it?

It's easier to decide to carrying on 'fighting the sysyem', when your Lawyers are working pro-Bono, and the Doctors that are dedicated to treating your child are NHS.

NannyOggsKnickers · 09/07/2017 11:27

There is an air of manipulation around the events of the last few weeks and I don't think it comes from Charlie's parents. I suspect they are now surrounded by a group of people who are looking to cash in on this in any way they can and are being egged on to more and more dramatic stunts. Who ever those people are, they are probably artful liars and manipulators. They should be prosecuted.

I fear that Connie and Chris are now in an emperors new clothes situation where no one close to them is willing to talk about the truth or the hard facts honestly. I can imagine it is a constant echo chamber- like the CA page- where any perceived 'negativity' is white washed out.

LogicalPsycho · 09/07/2017 11:28

They are prolonging their child's suffering to postpone their own.
That is not what a parent does.

RMC123 · 09/07/2017 11:28

There have only been 16 cases diagnosed in the world - Charlie is one of them.
And all of these people with MDDS have now waived their anonymity, don't suffer any debilitating setbacks, and have suddenly took up Twitter and Facebook in the last 2 months? *

There are a number of different variation of the MDDS gene, some more severe than others. There are only 16 people who have been diagnosed with the variant that Charlie has which progresses quickly and is clearly very very severe. Interesting as these cases are they aren't adding anything to the understanding of Charlie's case.

allowlsthinkalot · 09/07/2017 11:29

My understanding is that there have been 16 people affected by the specific mutation that affects Charlie.

There are other mitochondrial diseases and they vary in severity and I expect that these people coming forward to say they have the same condition actually have a different mutation that affects them less severely?

Ylvamoon · 09/07/2017 11:29

MargaretTwatyer- I think MN has been fantastic on this issue. We even had some posters explaining a few things in simple terms about the challenge of long term intensive care. It is apartment, that a lot of mums feel for Charlie and only wish an end to his suffering. Some even sharing their own heart breaking stories to give some insights into the difficulties faced by parents with terminally ill babies / children.
As for the pictures, everyone can see Charlie is very sick, people are allowed to their own opinion... just like you.

NMHQ go and delete if you feel this post is inappropriate!

LogicalPsycho · 09/07/2017 11:32

RMC123 and allowlsthinkalot thank you, i wasn't sure of that.
It just seemed for such a rare disease there are a hell of a lot of people claiming to have it.

That being said, I could say I'm a 6ft tall underwear model on the Internet. Doesn't mean it's true.

muckypup73 · 09/07/2017 11:33

I actually wonder if the parents know what they are doing is wrong and that is why they will not let anyone on their page that will actually question them?

Maudlinmaud · 09/07/2017 11:39

Mucky, I think the parents are well aware they face challenges and resistance. That must be hard when they are so desperate for support and help.
So I imagine they need a little corner that is completely positive and in agreement with them. That is the type of support they want /need.
They do not want the reality of the situation. They cannot face it.

LogicalPsycho · 09/07/2017 11:40

I actually wonder if the parents know what they are doing is wrong and that is why they will not let anyone on their page that will actually question them?

No, I don't think so. I have said this on a previous thread, but the parents responded personally to me when I wrote my thoughts on a FB article on Charlie.
I was told that I know nothing, Charlie is "not terminally ill", sent a picture of him with his eyes open and told to "look at him!", and that I shouldn't believe everything I read about GOSH regarding their child.

They are definitely down the rabbit hole in terms of having any perspective.

Ellie56 · 09/07/2017 11:41

I've read in several places that the 15 other people with exactly the same strain of mitochondrial disease as Charlie have all died.

These other people have a different strain of the condition. And clearly if they are writing posts on the internet they do not have the "catastrophic brain damage" that GOSH says Charlie has.

LogicalPsycho · 09/07/2017 12:05

Ellie56
If that is the case, and these people have a variation of the condition, that really isn't helpful or appropriate to wade in with anecdotal evidence

It would be like me trying to wade into a discussion about understanding how it feels to live with HIV/AIDS, and the prognosis of living with the condition, because my mum has Lupus.
Why not? They're both immune system diseases.
I'd quite rightly be told I have no fucking idea.

OhtoblazeswithElvira · 09/07/2017 12:05

Some horrendous things being said on this thread. Personal attacks on the parents, calling a sick child "a corpse", wishing that the courts would intervene so ending Charlie's life could be forced on the parents. No doubt many here think they are so much more sensible and compassionate than the parents, and more knowledgeable than all the experts Hmm

I have been reading the details of the potential new treatment available and now understand that it changes the case - whereas before there was NO possibility of improvement now there is potential for it. It is possible. I wonder how many of you have read about the new treatment, what it is, who it is being used for and why it's only available now - much more interesting than the daily dose of outrage to be had from the GOSH Facebook page.

LogicalPsycho · 09/07/2017 12:08

The only people who could accurately tell Connie and Chris exactly what it's like to live with the same condition as Charlie are unable to do so, because they are all dead.

What part of that is so hard to understand?

53rdWay · 09/07/2017 12:10

OhtoblazeswithElvira could you elaborate more on those comments on the proposed experimental treatment? As I understand it's exactly the same treatment that the parents wanted before - which the courts ruled was not in Charlie's best interests because it can't reverse his brain damage, even if it can cross the blood/brain barrier (which is what the recent claims are about). Have I misunderstood?

nina2b · 09/07/2017 12:11

Today 11:20 LassWiTheDelicateAir

I comfort myself with the thought that he almost certainly has too little brain function left to actually be aware of anything. If there is pain it's only happening to thenerveendings, not getting through to any kind of consciousness. You really have to hope so

My thoughts too. This poor child can't see, hear, move or swallow but who knows if he can still feel pain. I'm finding it very difficult to sympathise with the parents

So do I. Their behaviour is baffling to say the least.

LogicalPsycho · 09/07/2017 12:11

No Elvira I think you'll find everyone is in absolute agreement with the knowledgeable specialists and doctors, which is why they support their difficult decision.

nina2b · 09/07/2017 12:11

Sorry...

So am I...

GinSoakedTwitchyPony · 09/07/2017 12:13

OhtoblazeswithElvira could you elaborate more on those comments on the proposed experimental treatment? As I understand it's exactly the same treatment that the parents wanted before - which the courts ruled was not in Charlie's best interests because it can't reverse his brain damage, even if it can cross the blood/brain barrier (which is what the recent claims are about). Have I misunderstood?

I'd like to know too Elvira.
Please share links to what you've been reading.

MusicForTheJiltedGeneration · 09/07/2017 12:13

Please can you link to the information you've read @Ohtoblazes as I thought the same as 53rd

Leontine · 09/07/2017 12:14

I genuinely believe his parents have been driven mad by grief now and it's only been exacerbated by CA.

I think had it not been for CA they would have accepted their son's fate by now.

I still do have every sympathy for all those involved.

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