AIBU to think that thousands of people loving charlie and bradley is some what false.

[Lonelymummyof1]

I know exactly what It is like to have a poorly child same as hundreds more parents in the uk.
Set aside my belief that I believe that bradley has very little dignity and both him and charlie are now used as some weird sort of click bait.

The supporters I do not understand it ?

We love you, we are heart broken and we will miss you.

Now I get empathy but this is not empathy this is media posts just gone crazy to write the most heart breaking post they can.
I wish neither of these children would have to lose their life and can undetstand the parents pain just like the rest of the terminally ill children in this country.

You can feel sad that these things happen but this just seems weird and could not imagine allowing a nation of people watching my child pass away.

I mean how many of them 2 years from now will wake up on the morning of their anniversary and automatically remember them ?

Though they also mentioned the post mortem could be faked as well..

Mirror and Daily mail have picked the story up..most of the comments are along the lines as ones on here. They're not happy about that

All joking aside I feel so sorry for Charlie, my heart actually breaks when I think of his poor body just laying there for all to observe.

The picture with his eyes slightly open breaks my heart, apparently that means he can see and is alert. I have a picture of my little girl that is very similar, she was medically paralysed (she kept fighting the ventilator) and was slowly coming out of her sedation, she seemed slightly ok so they allowed her a few minutes before putting her back to sleep, her eyes opened but you could see there was nothing there. That's what I see when I see that picture of Charlie.

Marching around her house singing "we will not be silenced" has properly tickled me.

Quack

He'll probably be too knackered to go for the first few weeks anyway! I wouldn't make a big deal of it now, wait and see how you feel when the baby arrives. You might be fine with him going out for a few hours or he might not want to anyway.

The other day Bradley Lowrey's mum put a message up asking people to stop messaging saying that they think he will be dead within a week, or asking when they think he will die. Whilst I am sure she is glad that there have been so many supportive messages and that he has got to do some lovely things in his final weeks, I am sure in a way she feels like she could do without absolute twats writing stupid shit online and perhaps regrets making his illness so public?

Oh Quack!

I think the family really need to put a stop to it. Issue a statement giving their thanks to GOSH for the care they have given Charlie over the last few months, that they will be donating the money raised to the hospital to help find research and to be clear that this behaviour is not acceptable or wanted

When a member of Charlie's Army asked on fb whether the parents consented to today's protest, it can be seen explained several times in the comments that the family supported it and that Charlie's aunt Laura was directing the group as to what to chant. The group is not acting against the parents' knowledge or consent.

The parents wear Charlie's Army t-shirts and make videos that are posted on the group. It's definitely something that has the support of the family.

Can not believe I am going to say this.
When DD is in hospital from life support to infections.
Was in 20 months without going home once rhodiolo can back me up there.
My hair was never done, i basically lived with a messy bun n leggings.
I did not spend more time outside smoking with other parents ( in the no smoking entrance of great ormand street )
But according to charlies army because at the time I decided on pallative care i am practically willing to murder my own child.

Lonely

Lonely Your decision was a brave and wise one and the best for the time.

There is a question that I have been mulling over in my head a lot. Presumably the doctor in the US has withdraw his 'offer' to treat Charlie based on the up-to-date (and correct) medical information so what are CA hoping for in being able to get him to America?

I think people just want to be part of something, even if it is completely ridiculous and they haven't put any thought into what they are actually trying to achieve. It's all about them, no one else.

I really feel for CG's parents. Who is advising them? Where are their families and voices of reason? The last video they posted when talking about family members not having time to come to the hospital and say goodbye, all I could think was how is that in their son's interest? If he has been found to be suffering, a child who can not see, hear, move or communicate in any way will not get any comfort from it. It's just prolonging his pain.

I can see why his parents can't see through their own grief, but 'Charlie's Army' needs to calm the fuck down.

MyGrumpy my understanding was that he went on record for the court saying he didnt believe it would benefit Charlie, but that he would still give him the treatment if the parents wanted him to and could pay.

Which tells you everything you need to know about US healthcare really.

I am so thankful for our healthcare and judiciary systems for being determined to put the child's welfare ahead of profit, ease and even parental preference.

I think the parents are in denial (and angry) and the mob are just copying and extending the denial, imagining that that is supportive behaviour. Plus the "excitement of a cause" thing.

lonley I know exactly what you mean, in fact my hair got so bad from lack of brushing and just throwing it up in a bun that after 8 months I had to chop it all off because I was crying trying to et a brush through it, even my partner couldn't.

I've always questioned (to myself) why her hair was done so nice all of the time.

I did start smoking again though so I was probably out there more than I should have been, but I sat alone in my pjs with socks and a baggy hoody, I didn't speak to anyone.

I am so sorry for what you have gone through and I'm amazed at how level headed and calm you are.

(I hope me jumping in with similar experiences doesn't upset you)

Thank you alpaca and Rhod.

Their "get him to America" cries are based on the fact that none of them have bothered to read the court notes and realised that this is no bloody American Doctor with a magic wand. They think Charlie can go on a flight from Heathrow, land in the US via a quick trip to Disneyland and be saved by a quack who has never even tried the treatment on mice. You couldn't make it up.

Thankyou venus So profit over benefit of patient.

Oh my lord
If you are seeing this shit on facebook you all need to invest some time to

Unfollow
Or even - unfriend

I did a purge and I don't see this bike anymore

YANBU.

We had to fundraise for my brothers brain tumour treatment a while back as it was not provided on the NHS. We started small but he ended up as headline news and had to make Tv appearances and attend a lot of fundraising events. We raised huge amounts but with that came a huge public presence. It was horrible. He felt like a circus animal, but it was a means to an end. Unfortunately it was too late, we lost him and then had to share his death and our grief with people we hardly knew. He was 21 so was no where near as hard hitting as these poor babies.

No one can say what they would do in their situation. Personally I think the choice has to be taken from parents in these cases as they will hold on forever and it isn't fair, but then the whole situation isn't fair.

I'm so sorry for those of you who have personal experience of this. So very sorry. I can't imagine the horror. And @lonely - you made tue hardest decision that exists, and you did it out of LOVE. You should feel only pride in yourself, if that doesn't sound too weird.

Please let's not criticise a grieving mother for brushing her hair or having a cigarette though. If only because MN will end up deleting this thread like many before it. Let's keep this one to unpacking facts, if we can?

That's the thing there's no winners in this case..unless belive what has been written on Facebook.
Do know if it was my child my reaction be similar. I'd fight till the end. What wouldn't do however is want any of this! None of this lying and publishing names and protesting and people making it about them.

It's also true that some comments on the FB pages which are coming from what appears to be a more rational place aren't helping either - stuff about how much it is costing to treat patients in this situation, and other things, which naturally inflames all the other posters. Maybe NICE guidelines do include a quality of life/cost per year calculation but I'm not aware of any cost elements in this decision at all, apart from the doctor who apparently offered treatment at a price without any significant knowledge of the patient.

Lonely
I have thought about this a lot (morbid) and I always feel and believe that death is better than a life suffering . People hold onto life at all costs and I am sorry but I don't agree

I read about a burns victim and she was alive for 2 years after she was doused, and she recently passed . and that haunted me . What good came out of her 2 years of suffering ? For her kids to see her like that .

Anyway that's maybe a very crass example . but to want to end suffering and be at peace is not evil . It's an emotive topic and maybe inappropriate so I apologise if I have upset anyone