Charlie Gard Case 3

[LovelyBath77]

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

Yes, I have found in the States, there are doctors and surgeons who will take people on insurance and give them treatment that often doesn't help. It's all about the money.

makes me glad for the NHS and to be in the UK. Good to hear a voice from the States on this.

anne. I suspect the relationship had broken down because the parents are in total and utter denial. They don't believe any of the Drs, including the ones they've hired themselves. They are all liars apparently.

Now going to check my email

How are people being signed up for this petition without permission? This is shocking.

Some of the CA have had their dc operated on or treated at GOSH, they seem to have no complaints but still jumped on the illiterate bandwagon.

oh good God - I still feel huge empathy for the parents since my last post, and maintain that they are absolutely hanging onto hope (albeit futile) for their son - but this from the CA page?

Sandra Aiano Me to 😓 they need to get a independent report done fast, to save Charlie as I strongly believe that will help the judge decide also am the photos of his month changes we all can see he is growing normally in head and weight so they need to be shown to the judges as well

How can anyone look at the latest photos of this little boy and think he looks normal? He's so obviously filling up with water

Also there is pretty high chance if passing on again although it effects everyone differently and different organs to.
But if it is genetic mitochondria then it is only passed on by the mother.
There is do many different varients but nornally if symptons develop in the first few months of life and effect either the heart or brain early on the chance of survival til 16 is basically none.
People can be much older when symptons begin but tend to he milder and although life changing can survive a long time x

Just read this on CA
^Read up on this treatment too and other studies. It is pretty amazing.
I really do not believe after reading what all symptoms are and do that charlie is anywhere near as bad as gosh are saying. I don't get if me a member of the public can work that out reading bits then why the hell can Courts and gosh not notice he has a good chance and is thriving?'^

He's on a ventilator because he can't breath for himself. How is he nowhere near as bad? How much worse can he get? How on earth is he thriving?

Currently, an intensive care bed costs the NHS about £1,500 a day. Not sure if it is more in children's ITU. How many months have they been prolonging the treatment in this case? Three at least. 3 X30 days would be £135,000.

Who facilitates the proceedings? Hires the plane? Adapts it into a hospital ward? Gets hold of the oxygen cylinders and so forth? Liaises with whichever US hospital agreed to take him? Transfers the money to pay for the wrap-around care? Finds somewhere for Chris and Connie to live? Pays for that?

God knows but it would cost a fortune.

The cost of an ICU bed in NYC is over $2000 per day and that is stats from a couple of years ago. Then drs fees, hospital fees, all the extra bits and bobs, equipment to pay for. Hotel in NYC for the folks unless they live in Ronald McDonald house.

The real question is, after losing a huge chunk of money in converting the money into dollars, what the hell happens when it runs out? Bankrupt C&C?

It should not be about money though - that does not come in to it.

I wonder if what is happening is they are just reading 'mito disease' and not the rare version he has? It doesn't say about it in the group description. It is far cleared from the links GOSH give and the description. But then they don't trust them.

Charlie looks healthy, is growing, has clearly put on weight. Children under 2 don't remember things, that means he is the perfect age for experimental medicine, especially if the effects are minimal and the life changing benefits worth it. Charlie could help research for the future. Is Charlie getting the vitamins he needs to give him energy, ie b12, b6...new research shows how important b12 is. Keep fighting.
That's from fb on ca.

Ok for a start children under 2 DO remember things. They can't verbalise them but they do remember. My whole job is centered on that and pre verbal trauma. Perhaps I should give up now if the children I work with weren't affected by the trauma?

B12 is not new evidence.

I know it shouldn't be about money. It is just that it is wrong when a child may need the bed and care, and hospitals are struggling. I feel they should donate the fundraising money to GOSH to help pay for this.

Its not only rare mito that is dangerous though.
Kids with mitochondria that do not have brain damage but do have liver / bowel / heart failure are never eligible for transplants no one kicks up a fuss about that and how thats "murder"

I was aiming at the comment listing the how much his cost the the NHS not abroad.

Still sending abusive messages to GOSH, well done CA.

I found this paper about some of the other children with this same mutation as Charlie, and how they fared.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3891825/

@Notknownatthisaddress I am in the US and I know this group is for U.K. women but I've been following this case very closely and this seems to be one of the few places for calm intelligent debate lol trying to ask questions of the "Barmy army" results in being cussed out for daring to question anything contrary to what Connie wants or has said. It feels cult-like

I've been reading there too

"For a boy that's supposed to be on deaths door he looks like a beautiful, well built, strong lad!!! Doctors need to get their medical degrees checking!!! Look at that gorgeous, healthy, strong, well developing young man! Yet they are giving him end of life care....the world is a twisted place!!!"

I feel like I'm in a parallel universe

After reading this earlier:

Alittlepotofrosie Mon 10-Jul-17 22:12:25

Do you know what makes me really angry as well, on the GOSH Facebook page, they have highlighted a story about a little girl who looks about 10 years old with cystic fibrosis raising money and awareness for GOSH by doing a run and Charlie's army fanatics have put 15 angry face reactions on it. How do they think that makes that little girl feel? They couldn't even give a shit about her feelings, even though living with cf she's braver than all of them put together.

I would very gladly contribute to that brave little girl's fundraising, if you could give me the details. And I'm sure lots of others would too.

I keep posting this but I cannot stress enough how interesting and informative the videos on the Lily foundation you tube page are. There are lots of charity event ones but if you look through them you'll come to ones by Dr's from Newcastle/Gosh etc discussing research and treatment options and explaining the different types.