Yet another tweet from President: Charlie Gard

[_Jersey Girl]

I don't know if those are pledges or deposits. I'm off to try to find out!

[_Jersey Girl]

Okay that's a gofundme account, so the money's already been transferred. Sorry, I actually donated to another gfm page recently and didn't recall if that's what Charlie Gard's parents had or what.

Anyway, I don't know what happens to all that money now. I can tell you one thing though, I followed the case of Jahi McMath and her parents were heavily criticized for using gfm monies for purchases of high end accessories, meals and such as that.

Is that the chance one takes when donating to gfm?

Jahi McMath remains on life support if anyone needs to know that.

[_Xenophon]

Is that the chance one takes when donating to gfm?

Essentially, I believe they have a general tip of "don't donate to people you don't know" or something of the sort. And since the funds are available immediately to the organizer you are generally at the mercy of the organizer. Some relevant information:

https://support.gofundme.com/hc/en-us/a ... -refunded-

How can I get my donation refunded?

Since all donations are immediately available to the Campaign Organizer and may have already been withdrawn, we encourage donors to contact the Campaign Organizer to request a refund so they understand why the funds might be taken out of their account.

To do this, visit the campaign you’ve donated to and click or tap the envelope icon next to the Campaign Organizer’s name to send them a message about refunding your donation.

If you don't feel comfortable contacting the Campaign Organizer, please click "I Still Need Help" below and share your reasoning for your refund request so that we can try our best to help.

If you feel that your donation was misused or that the Campaign Organizer you donated to has committed fraud, you may qualify for protection under the GoFundMe Guarantee. To learn more about the GoFundMe Guarantee, please visit: http://www.gofundme.com/guarantee

What do you mean by misuse?
Any of these actions are considered misuse of GoFundMe:

1. The campaign organizer doesn’t deliver funds to the intended beneficiary
2. The campaign description is intentionally misleading to donors
3. The campaign organizer or beneficiary is charged with a crime related to misrepresentations made in their campaign

[_Jersey Girl]

Thanks Xeno. I didn't stay on the website long enough to find that information. I didn't donate to his fund, but I did donate recently to the campaign for a person I do know. I did sign the online petition for Charlie Gard.

[_Xenophon]

No problemo, Jersey Girl. I've never actually contributed through Go Fund Me but have backed several campaigns in both Kickstarter and Indiegogo. There is a lot of no delivery via this kinda crowdfunding so you just have to do some good picking (I think your strat of sticking with people you know is a good start). All these kind of sites have some protections built in but typically unless the fraud is really blatant, you're just SOL.

[_Jersey Girl]

No problemo, Jersey Girl. I've never actually contributed through Go Fund Me but have backed several campaigns in both Kickstarter and Indiegogo. There is a lot of no delivery via this kinda crowdfunding so you just have to do some good picking (I think your strat of sticking with people you know is a good start). All these kind of sites have some protections built in but typically unless the fraud is really blatant, you're just SOL.

Yup, that's why I mentioned the case of Jahi McMath whose unemployed mother blatantly posted pics of her shipment of new high end goodies such as Michael Kors purses and likely didn't think anyone was paying attention.

I've only donated once and yes, it's a local and very well known to me. Following their case on Caring Bridge.

[_Jersey Girl]

I haven't read the blog entries yet, but knowing the quality of this doctor's commentary, I'm going to post a link. This is Doc Bastard commenting on Charlie Gard.

http://www.docbastard.net/2017/07/charlie.html

This is a trauma surgeon who tells it like it is. Expect language.

[_Jersey Girl]

Here's one of Doc Bastard's comments regarding Trump's offer for Charlie Gard.

I can't really say what I would do in this situation.  I'd like to think that my rational side would take over and let my child go peacefully, but just like I tell my patients, I can't guarantee it.  How can anyone think they know what they would do with such an impossible quandary?  What I can guarantee, however, is that any BS offer from Donald Trump would be unabashedly and vehemently rejected with alacrity and aplomb.

[_Jersey Girl]

Here's what happened. The parents decided to withdraw the case when the US doctor ( Hirano) examined and tested Charlie and declined to treat him because based on his condition, it was too late for the experimental treatment to have even a slight chance of helping Charlie.

They got the determination from the one person they felt was reliable.

[_Chap]

Here's what happened. The parents decided to withdraw the case when the US doctor ( Hirano) examined and tested Charlie and declined to treat him because based on his condition, it was too late for the experimental treatment to have even a slight chance of helping Charlie.

They got the determination from the one person they felt was reliable.

We may note this from the hospital, in a statement made to the court. The whole statement can be downloaded here:

http://www.gosh.nhs.uk/file/23731/downl ... n=TWJkSxZu

I think the parts of this extract I have bolded deserve serious attention by all those who have commented on this very sad case - particularly the final bolded selection.

IN THE HIGH COURT OF JUSTICE FD17P00103 FAMILY DIVISION
IN THE MATTER OF THE INHERENT JURISDICTION OF THE HIGH COURT AND IN THE MATTER OF CHARLES GARD (DOB 04/08/2016)

B E T with E E N:

GREAT ORMOND STREET HOSPITAL FOR CHILDREN NHS FOUNDATION TRUST
and
CONSTANCE YATES (1) CHRIS GARD (2)

CHARLES GARD (3) (a Child by his Guardian)

GOSH’S POSITION STATEMENT HEARING ON 24 JULY 2017

[...]

8. Throughout, his parents’ hopes have been sustained by advice received from overseas. Mitochondrial disorders comprise a specialised and small international field. The experts in that field meet, collaborate and exchange ideas on a very regular basis and it is that valued collaboration that allows progress to be made and patients to be provided with the best possible care. Professor Hirano (“the Professor”), whose laboratory research has an international reputation, is very well known to the experts at GOSH and he communicated with them about NBT treatment for Charlie at the very end of December. In January, GOSH invited the Professor to come and see Charlie. That invitation remained open at all times but was not taken up until 18 July after being extended, once again, this time by the Court.

9. In the months between January and July, the Professor provided written and oral evidence for the best interests hearing in April and, after the Court decided that NBT was not in Charlie’s best interests, he went on to provide further written evidence for the Court of Appeal and the Supreme Court. Most recently, on 6 July, he co-signed the letter indicating that he had new information that changed the picture for Charlie, that brought this case back before the High Court.

10. When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie.

11. In the months ahead, all at GOSH will be giving careful thought to what they can learn from this bruising court case that might enrich the care it provides to its most vulnerable patients and families. It is hoped that those who, like the Professor, have provided the opinions that have so sustained Charlie’s parents, their hopes and thus this protracted litigation with its many consequences, will also find much upon which to reflect.