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 ?

Sorry, it was me who muddied the waters re: 10/11 July.

I know that was a stay until the EctHR made their decision but I wondered if the parents have latched onto that date even though there are no further appeals. I wondered if GOSH agreed with the parents that it would the day that treatment would be withdrawn and no later. I guess time will tell.

Charlie's parents aren't consistent. They say they don't think he feels pain yet say he gets distressed when he's due to be suctioned and also for heel prick tests. if Charlie really does indicate upset at these interventions then surely they can put 2 + 2 together and realise he's in pain/discomfort? Connie also said he doesn't like being tickled - if he can feel someone tickling him then he must also feel elements of pain?

Also if not the queen then maybe George clooney will help?

Well Cher and that woman who plays Janine Butcher in EastEnders have climbed aboard the bandwagon so who knows who will be next

The family’s local MP, Labour’s Seema Malhotra, used PMQs to say that while the chances of the US treatment helping Charlie were low, doctors could say within three months whether he was responding

To be fair, wasn't the three months originally mentioned by the American doctor, rather than it being an option which has been considered since then in the UK? Personally I thought the MP was just referring to what timescale might have been expected if Charlie had gone to the US for treatment... but I could be wrong of course

lonley what's it like?

Everyone in ICU has their own room with sofas.
Very mordern.
Could not believe it when we walked in there.
Then there cardiac ward again every has their own room with sofas and beds built on cupboards huge on suite bathroomsx

BCH is good. There's a Costa on site plus a newsagents selling sandwiches but across the road is literally every time of fast food you could want!

Cardio is always fancy as!

Yeah o think it was if he went to America it would only take 3 months to see a difference

I think we have to be careful not to get outraged by the CA outrage - outside this thread and the CA bubble, most people think "how sad" then carry on with their lives.

By paying attention and commenting, we could inadvertently be feeding the frenzy ourselves - it's feeling now a bit like rubbernecking an accident on a motorway. Maybe we just need to stop looking and commenting and let the sad situation run it's course while we look the other way.

Apart from the royal brompton 😂😂

Indigop
the parents are dealing with the unimaginable, who knows how anyone would react

Nobody knows how they would react, but I'm sure they have know certain ways they wouldn't.
For me, I can absolutely assure you that I would not be posing for photos with my DH staring at down heartbroken at our child to share with the world, or allowing my Sister to sell iPhone cases with my terminally ill baby's face on.

lonley wow! That sounds amazing. We were always on wards and the risk of infection was always great. My little one was in a side room if she or others had an infection. We slept in newly built accommodation for parents which was lovely. Even had a transplant room which is a great idea.

I think everyone on here has huge empathy for the parents and what they are going through. It is the questionable media conduct and even more questionable "support" they are getting that is causing a level of consternation on here. It isn't slagging the parents off and we are all only too aware of what they are going to have to face eventually.

I dont even have a phone case for my own child 😂

wow
the cruelty towards the parents who are going through hell on this thread is sick.
everyone so gleefully slagging of CA yet do not realise that they are just as bad. using a dying baby to score points.
can't for the life of me understand why mn hq allow it. yet ban talk of MM and delete about camerons parenting.
awful

I have given a very i hope double sided take on it actually.
I have said I get how they feel but what they are doing to.GOSH is wrong.

Does anybody remember the Charlotte Wyatt case a few years ago?

Premature birth, and had multiple profound disabilities. She was in constant pain, and doctors said without treatment she would die in days or weeks. But they fought it to High Court, where she was given treatment which would give her 'months or year's but at seriously low quality of life. But they wanted it.

Fast forward a few months the treatment meant that while profoudly disabled and needing 24 hour care, she was able to leave hospital.
But her parents had split up in the meantime- and both said they weren't realistically able to take her home and meet her needs.

Charlotte spent that next Christmas with a foster family.

Like Charlotte's parents, Charlie's parents have never actually had to deal with the full time, hands-on, multiple complex needs that a child so poorly has, because it is a specialist job requiring multiple skilled people even in a hospital setting.
For that reason, I think they possibly don't realise how much is going into just keeping him alive, by so many people.
That would tell them something if they did.

What I mean by mentioning Charlotte Wyatt, is that I presume by Charlie's parents insistence he must be allowed to go to the USA, they must be doing that and thinking it's going to allow them to take him straight home to their house?

Because surely they aren't pushing for a £1.2m USA treatment, so he can be flown straight back to GOSH to continue his poorly life in their ICU?

No logical from what I can gather, most people seem to think Charlie would be going home if the treatment worked, & riding bikes like the little girl in that picture that they're comparing him to

No Icu will be needed as he will be a healthy happy running around and cured.

This is what's so head bangingly frustrating about it all, they keep saying he deserves a chance, but when the more reasonable people say a chance at what? All this medication is likely to do is prolong him in the condition he's in now, they don't hear that bit! They don't want to know! They know better than all of these medical professionals & want to keep comparing him to these other children who are now riding bikes etc, even though they keep being told they did not have the same level of the condition as Charlie has. Their answer is still 'yeah but he deserves a chance' argh! Head bang!

logical you make an amazing point that resonates similarly to my experience.

I wanted so desperately to bring my baby home it was all I wanted every day. So by about 5/6 months old we started training. We had CPR training for both normal and trachi dependant infants, we had trachi training, feed training, I had ng tube training, oxygen training, medicine training, aspiration training, ventilator training and training for all the equipment you name it we had it. Finally, 8 months old both she and us were deemed able to bring her home. We started with day visits, that was great, scary but great we had another day visit again scary but great, she vomited and need us to change her tapes, she was crying (although no sound just kind of raspy breathing) my eldest started crying, not long two years old, I panicked (we had a nurse with us) it was so hard choosing who to deal with, I quickly got the nurse to hold the tapes while I decided the eldest was more scared so I dealt with her. I still thought things would be great at home. Even after the first and second night test at home I was convinced life would be great.

About a month after her being home full time it all hit us, everything she had went through came tumbling down things were hard, I rang up the hospital and begged them to take her back I even begged for a hospice place just so I didn't have to look after her. None of that happened and I realised I had depression and anxiety and still do, my child's care is a lot easier than Charlie's. I don't know how they would cope, maybe they would but I've also seen how it can all come crashing down.

This has to be one of the most disrespectful, inappropriate threads I have ever seen on MN. You are talking about a dying baby in a glib, distasteful way here.

But 'the army' are ok to send messages about him & share pictures of him all over the world, but because we are of the opposing view we are in the wrong?

If they want all of this all over the media then people are going to discuss it & have opinions

I am not defending them. I am telling you I think you are being disrespectful to a dying baby and his family - just my opinion

HarryHarlow I have not seen any comments about Charlie that would fit your description.

It's about the behaviour of 'Charlie's Army', the threats towards medical staff and the targeted campaign to stop donations to a children's hospital.

I am pleased that the thread has not been taken down, the policing of other people's opinions is not healthy or appropriate when this is being discussed all over the world.

I wish that threads had not been removed earlier as I do believe that it would have counter balanced the belief that the 'army' felt that everyone was behind their abusive behaviour.

To me, distasteful is his aunt selling air fresheners with his name on it.