Charlie Gard Case 5

[LovelyBath77]

A new thread to follow on from the others about this case.

Ah forgive my awful typing. Headache.

Sonsenueto, thank you for posting as well, as it helps with knowing what to say to family to help them understand. I admire the way you did that. Mine seem to find it too distressing to talk about and say thins like 'it will be fine' or 'it might never happen' I also found ti helpful to do a care plan with my doctors, in advance with things like different situations, meds which help you for pain, it gives some control. HTH. a little.

@Rhodiolia

I could not agree more.

We see millions raised for one child, yet hundreds of family's are left in a benefits trap whilst supporting very ill children.

This is especially so where conditions "fluctuate" between periods of relative "normality" and then crisis.

Yet the benefit system pays no mind to this. It's based on "now" - the time of the claim.

A big issue with this case, as Rhodiola so eloquently posted, is that it creates compassion fatigue for the many other families in dire need of financial support.

Their cases may not be played out on mainstream media but the day to day costs of looking after a child in ICU/HDU can be crippling.

This is the sort of injustice we should look to address as the MN community imho.

Mommagee all is forgiven, I don't write very eloquently and wish only the best for you and your family. I got the big C age 28 am now 64 and bloody well fed up having to go to extreme lengths just to lose a bit of weight every 10 years or so. So I had a tantrum and kicked the sick bucket once and for all.

It seems to be a case of "pimp your child out for funds or go without" when some really do not want publicity for their sick child but still need help and support and enough pennies to get a cup of tea.

Sostenueto, unfortauntely I am the same,and what comes out of meis exactly what i am thinking and thats is even in real lifeand it does get me in trouble, It is almost like I cannot help it, I truly cant,whats in my mind comes through my mouth,there is no filter................

I'm out for tonight? CA is not good for my anxiety!

Special thoughts to those lovely posters who are going through their own struggles, I'm in awe of you all, feel rather shit that I am probably wrapped up in my own little bubble and moan about such trivial things when lots of MNers are so ill.
Love and hugs from me xx ( don't care about it being unmumsnetty!! )

Sorry random question mark

Rhodiolia, its so sad when you think of it like that, isnt it?

Lovelybath77 its because they love you so my dear. Chin up and bathe in the glory of all the love from your family and friends. Xxxxxxx

Hey muckypup you haven't done anything g wrong! Come now its time we all had group hug and a toast to us all.xxxxxxxxx

Sostenueto,you wouldnt have said that had you saw me at the weekend?????? lmao, yep,pass em round lol

Omg that song. I'm practically cringing myself inside out.

A parade of DM sad faces set to music. Jesus 🙄

I like how nice this thread is, so unAIBU

Thankyou for making this possible

Good god, that's a Domino's garlic bread isn't it! Enjoy!

@muckypup73

Re: Rhodiola "It seems to be a case of "pimp your child out for funds or go without" when some really do not want publicity for their sick child but still need help and support and enough pennies to get a cup of tea."

It's more than sad really isn't it - it's fucking damn cockwobbling shitily and crapily outrageous

I'm sure I could have got some bollocks and other sweary stuff in there. Please feel free to oblige me...--

Laura Gard has posted asking people to be civil and life-threatening (posts accusing gosh of murder are still allowed) and someone has complained they were reported and banned for 24 hours, and yes they had been violent , but not towards Charlie's army or his family.

Lonelymummyof1, I do not care a goblins shite if its unethical on mumsnet but xxxxxxxxxxxxxxxxxxxx

To Charlie......
May tomorrow bring to you the very best.
Know that you are well beloved by your parents and family.
Know there are many that wish you peace
Know that in the end the gentle arms of Jesus will hold you gently and ease your pain whether now or in the future.

I hope this does not offend anyone but a little Cherub needs a prayer tonight.
Goodnight and peace to alllxxxx

Oh and the rest of the pizza is being shared amongst the amazing nurses and surgeons at the desk !

GriefLeavesItsMark, well asking them to be civil after all this time? why did it take till the day before her child death sentence to ask people to be civil???? why on earth did it take that long????? why oh why oh why???? is it because they have eventually realised that idiots are doing them no favours???? however at the same point they drummed all this shit up................................................ or is it the fact that people are actually challenging it??? this is more it!!!!

Lonelymummyof1, awww bless you xxxx

@Lonelymummyof1

so glad your DD came through today and it's great to see you eating.

Food = fuel to help you support your tiny dancer xxx

Grief was just going to say the same. here is the comment you mentioned. (cut and pasted)

My comment was reported and I was block for 24 hours yes it may of been violent but not violent towards anyone on here or the family it's to the people in this case we're all fighting for the same thing to save Charlie and I won't let people reporting my comment stop me supporting Charlie I will fight along side him until the end because every baby deserves a chance