Charlie Gard 20

[CremeFresh]

Don't know if anyone else has started a new thread .

a woman on bbc nws had to turn off ls for hr daughter in gosh-she has nothing but praise for them

i hate sticking up for our pm but shes getting a roasting for not stepping in i wish people wouldnt comment on our laws/government-its getting ridiculous

I'm very disturbed by the number of people still posting that he was failed by the medical and legal systems. They seem to genuinely believe still if he had gone to America he would have been cured.

I'm glad he was protected from more suffering. I'm glad we have laws that are able to be strong and objective. It's so terribly terribly sad but people posting that they have been up all night crying or that they felt sad last night but didn't know why (implying some psychic connection) - I don't know. It all makes me very uncomfortable.

I have seen a lot of posts blaming the 'government'.

Posted by people who are a bit thick and can't use big words.

really
i tried to report that but there is no report button.
it is awful, ugly

Just catching up with the thread. Great posts from many people here.

The Times has an article this morning that is scathing in tearing apart the PR vultures that surrounded the family. Its really upsetting reading.

It's behind a paywall so here are some key passages:

"Alison Smith-Squire, a freelance journalist who forged a career selling real-life stories to the media, was contacted by Ms Yates and Mr Gard in December and has known them the longest. Unusually, she has acted both as the family’s spokeswoman and as a journalist who sells stories about them to the newspapers."

"Smith-Squire also makes money by demanding up to £1,000 from media organisations that have used photographs from Charlie’s Facebook page. Unlike others representing the couple, who are acting pro bono, Smith-Squire is profiting from their case, although they have never paid her money directly."

"An aggressive operator, Smith-Squire shouted at one picture researcher from The Times who she claimed owed her money for a Charlie Gard picture, telling him: “None of this would exist if it wasn’t for me"... "What do you want me to do, do it as a charity?” she said. “I get paid for writing the story. That’s how I’m able to represent people for free. I’ve put in hours and hours for free for this family. It has taken over my life.”"

"By early July, a third spokesman was on the scene. Alasdair Seton-Marsden, a former marketing executive and Ukip council candidate, heard about the case through his family’s nanny, who is Ms Yates’s cousin. Despite having no PR experience, Mr Seton-Marsden concluded that Smith-Squire was giving the couple poor media advice because they weren’t reaching serious audiences such as the BBC’s The Andrew Marr Show."

"When Great Ormond Street released a statement last Saturday night warning that its doctors had been subjected to abuse, Mr Seton-Marsden, sitting at home watching a film, thought: “Bastards”. “I thought it was a cynical ploy,” he said. “What they were trying to do is get it over the Sunday papers.”
He sent Ms Yates Whatsapp messages urging her to respond, telling her she had 48 hours to save Charlie. She replied that she did not want to make any statement herself and expressed concern that criticising the hospital would lead to a backlash. Mr Seton-Marsden went to Sky News studios and, on air, repeated his view that the hospital’s concern was a cynical ploy."

"Ms Yates and Mr Gard were so upset that Mr Gard posted a Facebook message stating that Mr Seton-Marsden had “continually expressed views and put out statements on our behalf which we have not consented to and do not agree with. All he has done is tarnish the reputation of two parents who have been trying to save their son”. At this point they had re-established contact with Smith-Squire.
Mr Seton-Marsden asked Mr Gard to remove the post, eventually saying it was “libel”. Over Whatsapp, Ms Yates asked him not to sue her. Mr Seton-Marsden said he never had any intention of doing so."

Ms Yates and Mr Gard were so upset that Mr Gard posted a Facebook message stating that Mr Seton-Marsden had “continually expressed views and put out statements on our behalf which we have not consented to and do not agree with. All he has done is tarnish the reputation of two parents who have been trying to save their son”. At this point they had re-established contact with Smith-Squire.
Mr Seton-Marsden asked Mr Gard to remove the post, eventually saying it was “libel”. Over Whatsapp, Ms Yates asked him not to sue her. Mr Seton-Marsden said he never had any intention of doing so."
www.thetimes.co.uk/edition/news/charlie-gard-publicity-that-was-not-always-in-the-family-s-interests-pjqtvzwgz

Formatting fail. Sorry!

They will be teaching this in media studies courses in years to come.

Really, that picture is disgusting. I'm on Twitter but hadn't seen it.
I tweeted a screenshot of a death threat to The Met. Or others have emailed them pics. You could do so if you wish.

Thank you for your thoughts Shark. That puts into words exactly what many of us on here feel about the situation. I feel nothing but admiration for the fight Charlie's parents put up to try to save their beautiful boy, even though it was futile and controversial. I can truly forgive their lashing out and anger. I hope in time they can come to reconcile with the people who had nothing but Charlie's best interests at heart. Hopefully, they can redirect their energy into research for Charlie's condition. What a great legacy that would be for the short life of their precious baby.

I also think that Connie knew that the day she stopped fighting in court meant that the inevitable was imminent, hence her being in court rather than at Charlie's bedside. It gave her precious son a few more days and I guess in her eyes, a chance for a last minute miracle.

Thank you Scarlett for your explanation. Very helpful.

WeeWitch- that's awful.

I would like to echo the thanks to all those who shared legal and medical knowledge on these threads. To those who have shared very moving stories of their loss, grief or living with terminal illness I thank you for your insight and hope that you are all at peace. I remember literally howling when I had a miscarriage, I can not countenance the pain of losing a child you have held in your arms. I said on an earlier thread that we turned down counseling at various points in our fertility treatment as it felt like admitting defeat but we did have something lined up had our last try failed (which fortunately it didn't). I hope now they have reached the end of the road C&C seek help and that they can come to terms with the situation.

@TheWeeWitch thanks for posting that, it brings together a lot of the information on the exploitation almost of Charlie's parents.

I was wondering this morning if there was any more for the press to report about Charlie (other than his funeral) but I did wonder if the vulnerability of parents like Connie and Chris would get mentioned.

That UKipper sounds just evil, I do hope there are consequences for his actions, be it legal or too his reputation. Farage as well

I think we need to be careful about expressing admiration for a family that ignored medical advice given from many different sources and disregarded the possibility that, by prolonging his life, they were also prolonging intolerable pain and suffering.

Whilst I can understand their actions and feel sympathy for them, I admire the parents who have listened carefully to the advice given to them, possibly sought further opinions but, when those opinions concurred, put the needs of their child above their own fear of letting them go.

I would hate for parents who have made this horrendous decision to now feel that they should have done more or fought harder or parents who will have to do so in the future, to feel duty bound to plough on regardless of medical advice, grasping at every straw, however flimsy, to make sure they haven't missed out on a miracle.

We need to acknowledge that every parent who has followed medical advice and allowed life support to be withdrawn, without fighting for opportunities for inappropriate experimental therapies for a a child for whom it is already too late, has done the kindest and best thing they could do as parents, putting their child's best interests above all else.

One of the hardest things about this case is that so many people weren't doing anything but the right thing from their own perspective. I agree with those who found the stories shared on these threads grounding, always reminding each other that we are all human and going through unimaginable things every day.

The single thing I cannot forgive (and i know it's not for me to forgive) is Donald Trump's tweet. It was so perfectly poised to cause maximum disruption while meaning nothing. He reminds me of the Roman in Asterix and the Spy who does nothing but find people's weak spot and drop a few words onto it so that they destroy each other while he looks totally innocent.

Very Well said shark
Have lurked on all the threads
My son is life limited. He is currently well
We have had best interest meetings on resuscitation but still need to decide on future ventilation and when and if we taking him home. Thank you to those mumsnet posters who gave their professional and personal experience and particularly for the link to the Radio4 inside the Ethics committee podcast on whether a child should be ventilated.
I hope Connie and Chris will find some peace in the future

Agree gold.

I have seen many posts almost elevating cy to saintly status. Memes along the lines of "this is what love is" and "this is the perfect mother".

She's human, like the rest of us. Suffering, like many.

Gold you raise a salient point. As a nurse I have agreed with GOSH and have been concerned about the direction C&C have taken but feel that it is not our place to judge. I have always and will always admire families that listen ,question and ultimately put their loved ones first. It is right that we are questioned and often Patients especially parents know their conditions the best , we need to continue to be inclusive not exclusive. I hope this case does not destroy the openess that we have strived for.
Those families that have made the awful decision to let their loved ones go are to be admired.

Gold totally agree.

The hardest thing for me about this case, has been that Charlie was felt to be in pain, by many Dr's, many months ago. Yet this case has dragged on & on. That poor little baby, rest in peace.