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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

Original poster

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

999 replies

Lonelymummyof1 · 01/07/2017 07:29

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 ?

OP posts:
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alpacasandwich · 04/07/2017 19:01

There's a disturbing video on there now of a child going through nucleoside therapy. The dad wheels him out and proudly shows that he can now "stand" (entirely strapped to a board) for a few minutes after 5 years.

It's not a life I would choose for myself or my child, honestly.

Maudlinmaud · 04/07/2017 19:07

I had a look at fb just now. Very telling comments about not speaking to the media. I think CA thought they had more public support, given the tweets over the past few days. They seem bewildered at the negative spin the media is putting on this now. Instead of realising this is for the best, has been seen to be for the best by the courts and the medical experts.
It's been handled badly and the child is being let down. This is not a social experiment it's the end of a life.

LetsGoFlyAKiteee · 04/07/2017 19:09

I don't think it helped the whole Loose woman debate didn't go in their favour..Though naturally they're now attacking that Facebook page/ITV

stopfuckingshoutingatme · 04/07/2017 19:17

I read the judgement and it said that his parents have been permanently there doing shifts since day 1
So staying in the flats provided and either sleeping there or in ICU

I don't think they have been spending money and I don't think they have been designing phone cases

I think whilst they sit there in ICU their army have got a bit carried away

I also don't think they want this money it was only ever raised for their child

When he eventually passes their lives will be very hard and I cannot envisage them 'spending the money '

Some distasteful aspersions

LogicalPsycho · 04/07/2017 19:22

Maudlin

...the child is being let down. This is not a social experiment it's the end of a life.

Absolutely true, yet FB and Twitter are alive with the suggestion that even if treatment in the USA didn't work- and treatment has not even reached the experimental stage on mice, let alone been tried on humans with Charlie's particular strain of MDDS, it could help save more children in future.

As GOSH quite rightly pointed out:
The courts base their decisions for treatment on what is in Charlie’s best interests, not what is in the best interests of medical science.

I've deactivated Facebook now until Charlie's fight is over and he has been allowed to die with the dignity he deserved months ago. The things I'm reading from friends that I thought had more compassion and logic about them, are quite disturbing.

totallyliterally · 04/07/2017 19:23

Just read the comments on the FB page - clearly the members of CA don't see the irony of 'you are not a specialist so you shouldn't go on tv talking about the case'

Hmm

With so many of these things, the in fighting and pecking order of who is actually 'in charge' is likely to make it all implode.

Of the 250+ comments only about 5 asking about how Charlie actually is.

I still can't understand how people think it is possible to transfer the poor mite to the Vatican / USA

And people saying oh trump might give him American citizenship so he can then say where he can and can't go.

I just really really hope his poor parents have Simone around then to sit and talk to them and support them who really understand and can guide them through without the hype and untruths.

LogicalPsycho · 04/07/2017 19:25

stopfuckingshoutingatme it is in fact Charlie's family themselves who are selling the sweets, air fresheners and iPhone cases with his face on.

From their official site:

"This shop was set up by Charlie's auntie Laura so that people can find all the lovely items made by Charlie's supporters in one place. Everything here is made by or sourced by the lovely people found on Charlie's Facebook group Charlie's Army. Profits from items sold are passed on to support Charlie and his family."

And at the bottom, their bank account details and sort code for if people want to send them donations directly rather than to the JustGiving page which stands at £1.3million.

stopfuckingshoutingatme · 04/07/2017 19:26

Jesus alpaca / I had an hour to kill and I saw that too . I am not ever going on that CA page again as that's really upset me too

I can't say any more really as we veer into grey ethical territory

alpacasandwich · 04/07/2017 19:27

They're not just sitting there in ICU. They're running a website, instagram, their own FB pages. They're uploading things like a video of the mum singing, endless photos of a dying baby.

stopfuckingshoutingatme · 04/07/2017 19:28

Logical I agree

I just don't think that spending the money is even on their radar right now and ever will be really

This is why I never give to crowdfunding though Sad

I am sure it will be fairly donated as and when

It might well be their friends and family doing this crazy shit - but I don't think they have the will to even think about phone cases if that makes sense ?

alpacasandwich · 04/07/2017 19:30

stop it disturbed me. I once did a shift at a centre for people with complex multiple profound learning disability and it shattered me.

Met a young man who can't communicate or move, he lies in bed all day, his temperature is maintained by a bed warmer because he has such extensive brain damage.

I used to be more in favour of the argument that disabled people have a right to life, end of, and anything else is eugenics. But now... after seeing that, there is a grey area. Just being alive isn't living.

Sorry to derail.

stopfuckingshoutingatme · 04/07/2017 19:32

I agree and / I also agree best not to derail !!

Doubledottvremote · 04/07/2017 19:43

Fuck fuck fuck.

Just seen a post organising a protest in Glasgow. Apparently they have Nicola Sturgeon agreeing to come. I'm not an SNP supporter but have seen her at events a few times and have always not really minded her. Though she was just doing what she thought best etc. I will really dislike her and lose respect if she starts getting involved. I'd even think it's cos she wants more independence support. "Oh look at Scotland lovely Nicola wants to help"

Back the fuck out unless you're a qualified Dr with experience in this field.

Puzzledandpissedoff · 04/07/2017 19:46

This is not a social experiment it's the end of a life

Beautifully put Flowers

MommaGee · 04/07/2017 19:49

I don't think they have been spending money but being in hospital is flipping expensive and actually raising money for them to be there every day, day and night is actually worthwhile imo. I assume they're at Ronald MacDonald so will need to buy in food to cook there la take outs. Potentially paying for parking. All the usual household expenses like toiletries etc. And still rebut or mortgage on a house. Mom might be in ML but assume Dad has understandably quit or on unpaid leave. We did 4 months in so nothing compared to many on here but Jesus wept it bloody expensive and DH was working.

However what has been raised on just Giving etc and given direct to the family should cover this. There's no need for air fresheners and the like. The parents must have sanctioned it. That's what I think is distasteful and I don't think its healthy for them to think it wit somehow change the legal decision or the very tragic life of their son

JaniceJoplin · 04/07/2017 19:50

There is a lot not being said and reported in this case. The Dr who was contacted to treat Charlie in the US upthread is described as a quack using snake oil. This is not true he is the world expert on this and related conditions in a first class US children's hospital. His name has been blocked from publication but he is definitely not a quack using snake oil. GOSH are not experts in this condition it has only been reported on 16 times before, do how can they be. Personally I can not get over the fact that the Drs referred to the parents as a 'spanner in the works' hardly compassionate is it.

Ellie56 · 04/07/2017 19:53

Apparently GOSH has told the Vatican's children hospital that Charlie cannot be moved to Rome FOR LEGAL REASONS. Needless to say CA are up in arms about it.

SouthWestmom · 04/07/2017 19:56

Nigel Farage is talking about it on LBC, fuelling the parental rights argument

LetsGoFlyAKiteee · 04/07/2017 19:57

The lot are now jumping on that Arsenal fc have retweeted on twitter..somehow jivearsenal doesn't strike me as the name of their official twitter page..

Stopnamechanging · 04/07/2017 20:00

There is a lot not being said and reported in this case. The Dr who was contacted to treat Charlie in the US upthread is described as a quack using snake oil. This is not true he is the world expert on this and related conditions in a first class US children's hospital. His name has been blocked from publication but he is definitely not a quack using snake oil. GOSH are not experts in this condition it has only been reported on 16 times before, do how can they be. Personally I can not get over the fact that the Drs referred to the parents as a 'spanner in the works' hardly compassionate is it

I read the judgement on the case, the US doctor was consulted and agreed that it was not in his best interest to treat him.
He was interviewed by video link and has never even met Charlie.

It's not even something that should be considered at this stage.

alpacasandwich · 04/07/2017 20:01

His name has been blocked from publication but he is definitely not a quack using snake oil.

How do you know this if he can't be named?

Maudlinmaud · 04/07/2017 20:05

Some guy is going on this morning tomorrow to talk about this and wants to change the law. He has left CA now so they are distancing themselves from anything he says. I didn't think this situation could descend any further but I was wrong. I don't know how the little babies parents and family are feeling but it must be awful. Anyone who has been in this position understands the turmoil involved. This should be a time of love, support and kindness but we have people arguing the toss and spewing bile.

TrollMummy · 04/07/2017 20:32

I just can't understand where people think this is all going. The reality is that this is a very very poorly little boy and there is nothing the Pope or American doctors can do to change things.

MommaGee · 04/07/2017 20:46

But they have Trump and the Pope - the two most powerful men in the world so they'll magically fix a critically and desperately ill boy despite all the medical evidence to the contrary

JigglyTuff · 04/07/2017 20:46

The people on that CA page are absolutely vile: "This isn't meant to be unkind in any way, but the lady in yellow dress said about her adopted child could've passed away, and she would have let that decision be allowed, I cannot help feeling if it was a child she had physically carried would she have said the same??? I'm Not saying adopted children any lesser of value, but it came across to me like because she adopted she'd have let her go!!"