Charlie Gard

glenimp617 · 11 Apr 2017 at 14:38

Can't imagine what the parents are going through right now.

Question, maybe a silly one.....

Rather than try and send Charlie to America for medication, surely it would be far easier to send the medication to him? so come, what am I missing?

http://www.bbc.co.uk/news/live/uk-england-london-39534153

https://www.gofundme.com/please-help-to-save-charlies-life

TrojanWhore · 11 Apr 2017 at 16:21

I can only imagine that there is some issue with the legality (or possibly logistics - short shelf life from formulation) of importing such medication.

Also, it could be that in addition to the medication itself, that there is a reliance on a piece of expensive equipment, either to assist the treatment, or to verify results.
(i.e. an MRI machine costs millions, and I can't see how the NHS would fund the use of one, to verify/assist with a treatment which they were unable/unwilling to sign off on and provide in the first place)

*started trying to compare US private system to NHS, before realising I really don't know enough about either system to draw any conclusion*

Edit: just seen the bit about the brain damage, in which case, the parents need to take the docs advice, rather than spend 1.2 million on some hail mary pass which, at best, will leave them with pretty much a vegetable

beh · 11 Apr 2017 at 16:22

Have you read (linked from the bbc article) - https://www.judiciary.gov.uk/wp-content/uploads/2017/04/gard-press-summary-20170411.pdf ?

At one stage GOSH got as far as deciding to apply for ethical permission to attempt nucleoside therapy, a treatment that has never been used on patients with this form of MDDS. But by the time that decision had been made, Charlie’s condition had greatly worsened and the view of all here was that his epileptic encephalopathy was such that his brain damage was severe and irreversible, that treatment was potentially painful but incapable of achieving anything positive for him

CaptainComedy · 11 Apr 2017 at 16:25

It's sad but parents have to stop at some point.

The last people who want to admit defeat are doctors. It's wrong to villify the people who are trying to save your child, and when multiple are saying you are wrong, you need to check yourself, not go to the papers.

Dis86 · 11 Apr 2017 at 16:34

Poor kid

kindai · 11 Apr 2017 at 16:49

Followed this case for a while, its very sad but certainly seems to be more for what the parents want rather than what is right for the child.

Dis86 · 11 Apr 2017 at 17:00

kindai said:
Followed this case for a while, its very sad but certainly seems to be more for what the parents want rather than what is right for the child.

Too often is. Parents desperate to make a stand or go on a crusade.

FishFluff · 11 Apr 2017 at 17:28

Pretty sad case, but I'm sure if the parents looked at it objectively (impossible, I know) they'd reach the same conclusion as the judge.

Suicidal Ferret · 11 Apr 2017 at 18:12

Heart breaking story. Hard to know the right thing to do. But for me even a chance is enough. I find it contradictory that our justice system can issue this ruling, yet continue to deny terminally ill patients with chronic pain of their right to die at a time of their choosing.

glenimp617 · 11 Apr 2017 at 18:26

You do hear about patients undergoing a Miracle and I imagine this is what they are clinging on to. Impossible to let go, heartbreaking for all involved.

Destination · 11 Apr 2017 at 18:32

I find it absolutely incredible that they managed to get a gofundme page up to close to 1.3M for what is a completely hopeless cause.
It is an amazing amount of fundraising, but there isn't a tablet currently in this world that will switch on a defective gene in every cell in the child's body.
Great that someone chap in America fancied $1.5M dollars to 'test' on a child, the court's decision was in the best interests of the child, it isn't in his interests to be flown on life support to the US, to die there.

StriderX · 11 Apr 2017 at 18:32

Suicidal Ferret said:
Heart breaking story. Hard to know the right thing to do. But for me even a chance is enough. I find it contradictory that our justice system can issue this ruling, yet continue to deny terminally ill patients with chronic pain of their right to die at a time of their choosing.

One situation: Practically brain dead infant suffering for years with no known cure and no future.

Other situation: Rationally deciding to commit suicide at an age of responsibility by someone else who has no desire to commit murder, a good example being vets having to kill animals... a lot of them can't take that sort of mental abuse.

Dis86 · 11 Apr 2017 at 20:32

Hikari Kisugi said:
I find it absolutely incredible that they managed to get a gofundme page up to close to 1.3M for what is a completely hopeless cause.
It is an amazing amount of fundraising, but there isn't a tablet currently in this world that will switch on a defective gene in every cell in the child's body.
Great that someone chap in America fancied $1.5M dollars to 'test' on a child, the court's decision was in the best interests of the child, it isn't in his interests to be flown on life support to the US, to die there.

People lose their minds when it comes to kids though and struggle to think rationally.

Lokai · 11 Apr 2017 at 20:41

Dis86 said:
People lose their minds when it comes to kids though and struggle to think rationally.

Indeed they do. As would you if your child was in the same position im sure. Its horrific for the parents and its horrific for the poor child. There is no "good" outcome here

Dis86 · 11 Apr 2017 at 20:44

Lokai said:
Indeed they do. As would you if your child was in the same position im sure. Its horrific for the parents and its horrific for the poor child. There is no "good" outcome here

But it's not the parents who have donated that money, it's other people. Essentially they're throwing it away because that treatment will not work. There are other good and useful causes that money could help.

cheesyboy · 11 Apr 2017 at 20:45

It sounded to me like they just hoped for a small increase in his quality of life and, possibly more so, to help with the advancement of the treatment such that others may benefit. Like a legacy their son can leave for others.

They seem pretty rational to me.

Dis86 · 11 Apr 2017 at 20:50

cheesyboy said:
It sounded to me like they just hoped for a small increase in his quality of life and, possibly more so, to help with the advancement of the treatment such that others may benefit. Like a legacy their son can leave for others.

They seem pretty rational to me.

There's no medical evidence that this treatment works in the slightest. There's as much evidence for it as there is saying 'dancing round the child whilst singing kum ba ya' will offer any small increase to his quality of life. The damage has already been done. It cannot be turned back.

Lokai · 11 Apr 2017 at 21:03

Dis86 said:
But it's not the parents who have donated that money, it's other people. Essentially they're throwing it away because that treatment will not work. There are other good and useful causes that money could help.

Ah yep, i agree. This case has had a lot of media attention and as you say, people do lose their minds when it comes to kids thus all the donations. I certainly know this story has made me stop and think more now as a parent than i probably would have before.

Clav · 12 Apr 2017 at 08:35

I think the judge got it right.

cheesyboy · 12 Apr 2017 at 08:53

I'm a little perturbed that the parents weren't eligible for legal aid in a case where they are challenging their child's right to life-sustaining treatment. That's regardless of the rights and wrongs of the case (I tend to agree with the ruling, on the information given).

That doesn't sit well at all.

Charlie Gard

Sgarrista