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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Charlie Gard Case 3

954 replies

LovelyBath77 · 10/07/2017 14:15

A new thread to carry on from the previous ones about the case

OP posts:
Thread gallery
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Stopnamechanging · 10/07/2017 23:51

I would like to contribute for that little girl too if there is a link.

Stopnamechanging · 10/07/2017 23:52

Dustbunny1900 lots of posters from all over the world, you are very welcome to stay!

LovelyBath77 · 10/07/2017 23:52

The details about the little girl's race for GOSH is on the Great Ormond St Hospital's FB page.

OP posts:
Stopnamechanging · 10/07/2017 23:53

Wow and the CA have been sabotaging it, lowest of the low.

LovelyBath77 · 10/07/2017 23:54

I also found this which others may be interested in, a fun run for kids to raise money. www.gosh.org/get-involved/fundraising-events/run/5k/rbc-race-kids

OP posts:
Stopnamechanging · 10/07/2017 23:55

I am probably being thick, I found her run but can't see a link to donate.

LovelyBath77 · 10/07/2017 23:57

I couldn't see how to link but here is the info (with the angry faces, nice!) about the girls charity event mentioned upthread. (cut and paste)

“I’m basically nervous and excited – I’m nervexcited! I’m looking forward to crossing the finish line with Tilly, as a team! It feels odd to be raising money for my own hospital, but I know that I’m doing something good for the other children.” Ava visits GOSH regularly for treatment for her cystic fibrosis. This Sunday, Ava and her friend Tilly will be taking on the Great Newham Family Run to raise money for GOSH Charity. It’s a huge challenge for Ava, who has never run so far before. Good luck!
Test yourself like Ava and Tilly and take on a challenge to support the children at GOSH: gosh.org/get-involved/fundraising-events
Read more of Ava’s top training tips: gosh.org/news/ava-takes-challenge-gosh

OP posts:
NikiBabe · 10/07/2017 23:57

I feel like signing up to a run or bike ride for them now.

MaQueen · 10/07/2017 23:58

Charlie is clearly very swollen due to fluid retention. I suffered very badly with fluid retention when pregnant. Feet and hands swelled up like balloons. It was extremely painful, my hands and feet felt really bruised and tender to the point where it stopped me sleeping and had me in tears (and I'm very stoic, as a rule).

Poor, poor little boy.

LovelyBath77 · 10/07/2017 23:58

Here we go

www.gosh.org/news/ava-takes-challenge-gosh

OP posts:
LovelyBath77 · 10/07/2017 23:59

When i read about his condition it keeps mentioning lactic acidosis, wonder if it is that too.

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Stopnamechanging · 10/07/2017 23:59

I have just looked at who put the angry faces on the little girls page, one is a health advisor for north west ambulance service , another is a vicar from the NL.

I am speechless

DarthMaiden · 11/07/2017 00:05

From what I've read the relationship between the parents started to break down last year after Connie found out about nucleoside therapy being offered in the US via online research.

GOSH applied for ethical permission to try this treatment - and had to do so as it is untested, but by the time the decision was made, Charlie's condition had sadly deteriorated to a point where Doctors did not believe it could possibly be of benefit.

Charlie's parents have clung to the position that this therapy would potentially have been helpful and should have been administered sooner. It's suggested they feel GOSH delayed treatment at its optimal point. In addition they profoundly disagree with the assessment of Charlie's level of brain damage.

Combined comes the assertion that GOSH are failing to act, even now, because they are covering up the "mistake" of not referring him for treatment in the US late last year/early this year.

In part I can sympathise with their frustration. However it's simply not appropriate to submit anyone (especially a child who cannot communicate their own wishes) to untested, unproven treatments without due consideration.

I think this is why the relationship has become so fraught Sad

WeDoNotSow · 11/07/2017 00:08

What I find really distressing is how the media keep reporting the 'there is a 10% chance of improvement'. They KNOW that isn't true. They are wilfully misleading people, and I just can't understand why.
Surely they'd still sell papers by reporting the facts accurately?!?
Many things about our country are amazing but our media are fucking vile. Absolute abhorrent

MaQueen · 11/07/2017 00:12

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

MissEliza · 11/07/2017 00:26

Darth thanks for explaining it so concisely.

SumThucker · 11/07/2017 00:41

My head fair fucking explodes reading the CA page but I'm like a moth to a flame, can't stop staring in morbid fascination at the comments.

SerfTerf · 11/07/2017 00:46

One thing we learnt today is that the Dad is just as firmly opposed to the Court's judgement as his partner.

Connie must be taking the media lead because she feels more comfortable doing interviews. They're clearly completely united in their thinking.

BoreOfWhabylon · 11/07/2017 00:50

@Stopnamechanging if that health advisor from NWAS has made any posts criticising GOSH/NHS or batshit stuff eg "chunky monkey", "they are trying to kill him with morphine", etc. please screenshot and report to NWAS. They are likely to take a very dim view indeed.

HollyhocksAndAPompadour · 11/07/2017 00:51

I've been lurking on this thread (and previous ones) for a few days, and have found your discussion compassionate and kind. I have been particularly struck by the empathy shown by people who have faced similar situations to Charlie's parents. I wish there were more HEAs.

I'm only posting now because I thought that those of you interested in the merits of the nucleoside therapy proposed by Charlie's parents may find the explanations given on this thread on another site useful: Pistonheads.

A poster there, Wiccan of Darkness, explains in a series of very informative posts (complete with diagrams) why he (at least he sounds like a "he") thinks that the chances of this therapy working on Charlie Gard is so low, even though it has worked to some extent for people with a different mitochondrial disease. It sounds like he works in a medical or related research field.

WeDoNotSow · 11/07/2017 00:51

Didn't the dad punch the wall in court today or something. I feel for them, but how can anyone think that they are capable of any kind of critical thinking? WHY would a hospital try be iill a child. HOW can the hospital be trying to 'make money' out of this?
It's becoming farcical

TheWeeWitch · 11/07/2017 00:59

Hollyhocks I couldn't make your link work, but I found the post nonetheless. Here it is again, with some screen shots.

www.pistonheads.com/gassing/topic.asp?t=1682383

Charlie Gard Case 3
Charlie Gard Case 3
Charlie Gard Case 3
HollyhocksAndAPompadour · 11/07/2017 01:04

TheWeeWitch, sorry about that. Obviously haven't quite got the hang of this posting thing.

MargaretTwatyer · 11/07/2017 01:08

Ok, here you go. From the very first 'it's not all about them' dig through all the informed and rational posts about Connie giving them a 'weird feeling' and 'being a little off' in a way they just 'can't put their finger on' or Connie's accessorising or facial expressions being inappropriate for a distressed mother.

Oh, although I have left out all the randomers making diagnoses of liver/kidney failure/oedema from looking at photographs.

Sorry, it's not brief. But that's because there are so many nasty comments. These are just the worst:

They even want to dictate how they say goodbye to him and to create "memories" before they let him go. Its all about them and their vision of how things should be.

Its clear from the DMs that some MNers have received from Connie Yates that the parents have now completely lost touch with reality.

His final days have been turned into a fucking circus

a child's needs are indeed going to be thrown under the bus in the name of adult politics, media popularity and gooey, ignorant sentimentalism.

the parents obsessive and damaging behaviour.

the article today saying the parents are banned from the doctors meeting with a whole Daily Fail sad face photo... if they have a publicist they really need to fire them.

The parents' motivations for stringing this out are getting more and more murky by the day...

So when the family released this image of themselves, it was sold to a Sell Your Story page? Wow. I have no words. It makes the casual sunglasses on the head pose seem even more distasteful.

I had all sympathy for the parents, but I'm really starting to question their motivations now. The carefully released images, merchandise, it's just sick now. They are using a tragic situation for publicity.

but there is no shadow of doubt that both the parents and publicist are making money from this

These photos of the parents aren't appearing by mistake though, they are still actively courting the gutter press

I think the parents have completely abused the extra time they had to say goodbye 'in private'.

I think they are trying to manipulate the situation and as usual it's the little boy who's suffering

I hope to Christ, that if this treatment is allowed to go ahead, that Chris Gard and Connie Yates don't have the temerity to force GOSH Doctors and Nurses to keep Charlie as a patient after it. That would be absolutely grabbing and utterly without conscience.

Free Lawyers, free paid press coverage, selling family photos, 2million in the bank, treatment offered free, but still the drive to buy Charlie merchandise from his family shop rages on...Charlie's best interests ceased to be the priority in this months ago.

It's all made up media bollocks. But then there's the picture of his parents in a church, candle lit, behind an alter conveniently engraved with "suffer little children to come unto me".

The last place I would be now is on the sofa of GMB rather than at the beside of my child.

Because the little boy needs to die with some dignity, his suffering needs to end, his parents are selfish and doing whats in their best interests, nobody elses.

So, have neither parent been with Charlie all morning?

Connie this morning: We are not bad parents, we are there for him all the time, we are completely devoted to him and he's not in pain and suffering" Not this morning you weren't. And yes, he is suffering.

I think I am entitled to call them selfish all I like.

I just don't understand all the 'posing' the parents seem to do. I've never seen that from any parent in any of the intensive care places I have even with my child.

He is now being photographed with stage props to further the agenda. Poor, poor boy.

'Charlie's parents, especially the mother, are indescribably selfish.'

The parents' snake-oil nonsense is what has caused this

we hav animals we let them go when thrs no hope- why cant thy see what theyre doing is for themselves not their son

Donut it shocked me. Music blaring and the parents talking into the camera. A really personal, special and rare experience paraded for all to see. That poor child is just a side show

DonutCone, needing more time for precious memories??? or more time to di television interveiws, write to all sorts of folks? have a facebook funding site as well as the rest??? wheres the memories in all that?

I dont think they are like us . I mean the MN demographic . They are differently educated and differently wired . As are many people.

It's almost like Charlie is being paraded by the press and the parents are on a power trip

Charlie's parents are now at a ridiculous point. Its bordering neglectful. They need to shop this attention seeking medua courting

Connie clearly believes Charlie is going to get "his chance" (whatever she perceives that to be) or she wouldn't be spending so much time away from him, in what could be his last few days, courting the media.

I trust a mothers instinct but I really think something is very off with Connie.

The fucking circus going on in that paediatric ICU is abhorrent. Posing for photos left, right and centre. Using that poor baby as a prop with passports and wearing an American flag style babygro

They've also suggested that the family put cameras and recorders in charlie's room and called GOSH 'nothing more than servants'

I am beggining to wonder if this is more about his parents fame and fortune than it is about the poor child.

How can any parent smile into a camera lens standing over their child like that?

I suspect the parents are liking the attention a little to much now. I admit I don't like them, I mean the mum is forever smiling and posing with this poorly baby who should be in heaven now.

Hard to tell how much when the mother's PayPal details are being given out for direct donations. It's horrible they're profiting from his illness.

What would possess a parent to smile in that sort of a photo?

It makes me even more suspicious of the parents motives for stringing this whole thing on...Y'know, just the sort of person you would use if you wanted to raise awareness of a serious disease and not because you wanted to make a quick buck selling your misery story...

his parents are looking at the camera and not at their poor child! Charlie is there as a prop.

but why is he their prop? for what. finacial gain?...Or is it for them to be in the limelight??? to be rich and famous?

TheFairyCaravan, would you not want to spend every second with your dying child? as opposed to protesting? what do they think they are going to acheive? its bloody cruel what they are doing

The posing - even with sunglasses on head - is very unwise and quite unbelievable.

The sunglasses on head made me think he was probably having a timeout in the hospital gardens just beforehand, but then got a call saying, "Come back inside, they need a photo of us together standing over Charlie for the Daily Express".

I remember a case in the past where the parents fought for the right of their child to be treated, eventually...they swanned off to start a new family...Charlie's parents will likely do the same IF he is even capable of living without machinery. He wont stay this size forever

The above quote is edited but in it's full form basically says that Charlie's parent's will 'swan off' to have another baby at which point they will dump Charlie when they have another child and he's not a cute baby they can care for easily any more.

That's the first thread and a half and I really do need to go to bed now. Might carry on with the rest tomorrow but from reading it, it's more accusations of fame and money seeking and vague accusations of there being 'something not right' about the parents.

Anyway. Enjoy waving around your pitchforks criticising the clothing and accessories and facial expressions of a family going through a horrible time.

Personally I think that's far more morally dubious than having sunglasses on your head in an ICU.

Rabbitnothare · 11/07/2017 01:18

Really can't see the issue with those comments Margaret, no death threats, abuse against medics or vile words said to grieving mothers as has happened on the CA page.

They are not saintly beings and it's time that Charlie was put before them.

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