Or maybe now that its become ‘too late’ to use that money for Charlie – it can be moved to so that it supports patents who advocate for their children against the leviathan.
The parents have been pissing on that hospital for months so I doubt that they’re suddenly going to let this go. They blame the hospital for not letting them start treatment right away, even though the damage caused by the seizures had already taken place before the the American Doctor butted in.
I really blame Doctor Hirano for this. He made promises to the parents about the extent of Charlie’s brain damage before personally examining him, all in order to promote his experimental treatment. Now, months later, when it turns out that the hospital was correct and Charlie’s damage was irreversible, suddenly Dr. Hirano bows out and the Hospital is left being blamed for the delay.
Doctor Hirano’s irresponsible behavior has caused real pain and damage to the Gard family and the Great Ormand Street Hospital, both.
The parents have mentioned creating a foundation of some sort in Charlie’s name which may in fact be a good use for it, depending on the purpose of said foundation.
The brain damage wasn’t caused by seizures. It was caused because the mitochondria, the bits of cells that allow us to utilize oxygen and that generate energy for the cell, were malfunctioning. The cells don’t have the energy to function or even live long-term. His cells don’t have the energy to have a seizure.
And, frankly, I think the parents share some of the blame for the current mess. When they didn’t get the answers they wanted (as opposed to those rooted in reality) they went to the press and stirred all this up. I understand the motivation, but they are in part responsible for some of the mess.
Yes, the underlying problem was the birth defect affecting his mitochondria. But things really went downhill for Charlie last December & January when he had a series of horrific seizures.
From Wiki -
“Encephalopy” is a catch-all term for brain disease or injury. The ongoing seizure problem led to increasing brain damage in a vicious cycle. This is what caused the hospital to stop seeking experimental care and move to put Charlie on palliative care. The parents wished to fight this which they saw as giving up and sued the hospital to allow them to take Charlie so he could get the untested drugs that Dr. Hirano was offering.
This is when Dr. Hirano really crossed the line, imo. He insisted - without ever examining Charlie personally, at the time - that the brain damage from the seizure probably wasn’t permanent and that his drug (which had never been tested on a child with Charlie’s variant of the disease could reverse the damage.
Now the parents are blaming the hospital for not allowing them to start the treatment last April when Dr. Hirano started making his claims from a whole ocean away.
No argument from me.
Yes how dare that doctor try and save a life, he should have gotten on board with making sure the baby died “with dignity”, whatever that means.
It seems that Hirano had a financial interest in the treatment he was offering.
This quack should be held responsible for knowingly holding out false hopes to the parents in order to publicise and promote his own product.
He wasn’t trying to save a life, he was trying to experiment on a terminally ill , horribly suffering infant. Fortunately, he was prevented from doing so by the courts.
And don’t pretend you don’t know what “dying with dignity” means.
“The leviathan” is the one that was advocating for the child. The parents were, almost certainly unintentionally due to being lied to, failing to act in his best interest.
From the BBC -
From here.
Whilst you may be right about where the money goes, you’re wrong about their view on the hospital.
You do know that doctors running trials would not seek out impossible cases, rather they avoid them like the plague if they can because having patients die during their trial will make it less likely that they’ll get FDA approval or funding from drug companies.
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That’s not how trials work. The parameters for inclusion/exclusion of a patient are set ahead of time. The doctors don’t get to cherry pick patients along the way.
If this child met the parameters for the trial (and depending on what type of trial it was- phase I trials are only looking for toxicity of the treatment, not efficacy, for example) there could be a motivation to include him. In fact, any patient with a rare disorder would be desirable, depending on what outcome the trial is anticipating.
Unless, of course, the doctor has a financial interest in the treatment (as Hirano does) and wants to promote it. Any publicity is good publicity, and it would be very easy to find excuses when the child died. As it is, he is now well-known and in a good position to prey on the hopes of other desperate parents.
And also if he has zero interest in the child’s well-being, as is clearly shown by the fact that he never even bothered to look at the recent scans or medical records, or read the statements of independent medical experts.
The doctors who actually examined Charlie Gard rather strongly disagreed that this was not an impossible case. I’ll take their word for it, rather than the word of a doctor who didn’t even bother to read his medical notes.
Dying with dignity mean not subjecting the dying patient to useless and futile treatment. I don’t know why people have trouble understanding that. It means focusing on relieving suffering even when you can’t cure what’s wrong with the patient. Again, I don’t understand why this is such a hard concept.
Other than many people just can’t wrap their heads around certain facts, like we can not stave off death forever, we simply do not have useful treatments for some diseases, and some freak out with the sick and dying person is a baby.
Which, one would assume, should include a requirement for him not to be already irreversibly damaged, which was the point at issue.
Charlie Gard has passed away.
I hope that this doesn’t leave a lasting stain on GOSH’s reputation, they do great work.
I hope that the parents will be left to grieve and come to terms with it all.
Doesn’t sound like it.