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 ?

That phone case. I just don't have the words.

That poor baby, I hope he has a smooth and restful passing in the arms of his parents.

I have no idea how the staff at GOSH are managing to process this circus aswell as continuing to provide their fantastic standard of care to the rest of their patients. Truly amazing people.

Whilst I find the selling of merchandise distasteful in the extreme, I am not sure what effect terminating parental rights will have. In any event, this is a very rare situation (thankfully).

What annoys me most are these suggestions that "parents know best" and should decide whether their child lives or dies. Does that apply to parents who murder their own children? No? Well then obviously there is a point at which parents may not know what is best for their child, that their response to a problem is not within the range of reasonable responses, and as such the state must intervene.

I really did think that last year we had reached 'peak stupidity' but it's starting to look like we were only just scraping the surface.

This whole thing is just so appalling on so many levels. That poor boy. Who is with him while people are selling scented merchandise? I can't even begin to put in words how angry, sad and confused this whole unseemly spiral of inappropriateness makes me.

God help that wee one. I hope he gets to be at peace soon.

It's hideous and out of control. We've been through two rounds of testing for mito with one of our sons and it truly is a foul condition with no known cures.

He's got another condition though which will see him dead in the next few years. There's a chance that an experimental complete intestinal transplant could work but he's been flatly refused even a chance at that because of his intellectual disability and his autism. And it breaks my heart but I think it is the right choice for him. He would not cope.

I don't understand how his parents could even remotely be convinced there is a chance for Charlie to have a quality of life. It's tragic.

This merchandising is revolting.
I was aware of the blue wristband some time ago and don't have an issue with that.
But using Charlie's image in this way, eg those phone covers, is disgusting.
Poor Charlie, locked into a world of darkness and silence, unable to cry when he's in pain, having frequent seizures and given no dignity.

I'm so angry about all of this.

Fuck.Me.

I don't think I have ever seen anything so crass as the items in the "shop". I cannot believe the family set that up thinking it was a good idea.

I've read some of the many, many comments on both GOSH and CA facebook pages and I am horrified. Poor Charlie has no dignity left and his "army" are whipping themselves into a frenzy. What on earth do they actually think this will achieve? Do they really believe he can safely fly to America, receive the treatment and be cured? REALLY? Or are they just relishing being part of something? Like a weird online flashmob. I don't get it.

My heart aches for his parents - it truly does - I can't imagine the pain they're going through.

I've messaged GOSH and had a lovely reply. I hope the messages of support they are receiving are outweighing the abusive messages and phone calls.

StU I'm so sorry for what you're going through.

Oh gosh StU, I'm so sorry

I'm sorry too StUmbrage.
I was posting at the same time and have only just refreshed the page so I've just seen your post.

I'm sorry StU
I wish you and your boy strength and peace.

Stu is your little one on tpn to ?
A intestinal transplant was also suggested to us but if it is down to mito unfortuntly would no longer be an option.

It's an awful situation that's now totally out of control.

The family seem totally unwilling to listen to the medical professionals.

God knows it's an awful thing to be told that no more can be done; but the levels of denial have escalated beyond all reason and the truth of his condition is being lost amongst a diatribe of erroneous medical "evidence" and "similar" cases which have no bearing on Charlie's actual condition and prognosis.

I feel very sad for his parents, but we are at a point where is difficult not to feel that the campaign and the need to "win" seems to now be bigger than the plight of the child.

Poor Charlie, locked into a world of darkness and silence, unable to cry when he's in pain, having frequent seizures and given no dignity

That's the brutal truth, isn't it Gin. I don't think any of these pro life supporters have even given this a second thought. I keep seeing "where there's life, there's hope".

No. Far from it.

Stu

I cried last night thinking of poor Charlie and the awful existence he has. I really really hope he is not in pain but I very much doubt that is the case.

Now I am upset and angry. I am disgusted at the Barmy Army and, to be honest, not that impressed with the parents as horrible as that sounds.

It's a shame GOSH didn't let Charlie go on Friday. Now the situation is like a circus with the Pope and Trump getting involved. The awful Katie Hopkins has stuck her oar in saying the final decision should always be with the parents! Oh really.

When is Charlie going to be allowed to be at peace?

Not to mention the ventilators forcing air into his lungs. Adults find being on ventilators absolutely dreadful. This is a tiny baby, this is his experience of life. So awful.

StUmbrage I'm so sorry for what you and your family are going through

Stumbrage

My best wishes and strength your way . I hope this case and all the publicity is not too harrowing on top of what you have to deal with in this situation

Wishing you the very best for the hard road ahead and sending peace

I have also seen parents of children who have mito posting their stories of how they survived to adult hood.
Mito is unfortuntly complicated and there is diff types and effect people differently.
However when organs are effected early such as lungs, heart , bowels and liver is when unfortuntly they will not see 16.

Mito plays alot on psuedo obstruction intestinal failure.
Not in other intestinal failure patients without mito, bowel and liver transplant tend to tried once liver fails from the TPN.
This is because they are on tpn die to a bowel deformation like short bowel or hirshprungs disease.

Intestinal failure in mitochondria is not a structual problem but a cells problem same as the argument of the brain mri.
When they look at my DDs bowel it looks normal yet does not work or absorb.

This does not mean it works or that there is hope that it ever will.

If mito is the cause they are not eligible for a transplant as replacing the bowel will not cure it.
The whole process would just happen again.

I put my child through 8 months of constant ventilation, feeding tube (still has now at two years old) trachi changes and vomiting not to mention all the checks and blood tests she continues to have. I still think what they are doing to Charlie is wrong, sick and disgusting.

I'm so furious now that I've seen what they are selling.

Now I am upset and angry. I am disgusted at the Barmy Army and, to be honest, not that impressed with the parents as horrible as that sounds.

I agree, I'm sorry to say.

I think real bravery would be to now let their poor boy have peace and dignity. To stop riling up this mob. To stop pouring scorn on the very people that have been dedicated to caring their child his whole life.

There is no bravery or dignity in promoting Charlie Gard "Smell The Success" air fresheners.

The world has gone mad
I heard a caller on radio 5, several weeks ago, say we don't need doctors any more as we have Google!
And why anyone would look to the US as a model for anything is beyond me
This baby would not have had any treatment in the US without health insurance
Is it about the money now?

Thanks for all nice :). He's on elemental formula at this stage (he'd be bloody dead in the US at the cost of that and our circumstances). TPN will happen at some stage although we've been told his end will probably be very sudden.

God it's all so awful for our kids with genetic shit. Poor Charlie though.