Posted on 07/13/2017 11:31:01 AM PDT by ColdOne
I’ll be interested to see what his results are after the examination.....it’s also interesting he does not want his name to be known nor will the press release it.
I am not relieved..... if this does not do more than just ‘ease his symptoms’ without change to his overall health condition....which he is dying.
We already know he will not see nor hear regardless of the treatment...the condition of his brain matter will determine much....I continue to stand where I have in this case.
We differ on that. Socialized medicine is built on the necessity of killing off anyone who takes too much out of the system. The NHS drs have a built in bias against any case that uses more than its share of the socialist allotment. The only way systems such as the NHS survive at all is by treating the mild-to-moderately sick *productive* members of the tax-paying base while providing death with dignity to anyone who is draining the communal resources. They have been chomping at the bit to see Charlie dead since his original diagnosis, and all their decisions have been made with that goal in mind.
Finally an independent dr will get to take a look. It’s a miracle; ongoing prayers for Charlie, his parents, and all concerned. .
I have worked with brain injured children and neuroplasticity is a very real thing. Besides, the child’s survivability is only part of the issue. The larger picture here is parent’s rights but it appears you miss that.
There’s so much intentional murder via NHS, I didn’t know where to start. Dehydration is only one method of killing off the unwanted; there are many others. If Charlie received any particular accommodation, give his parents credit. They have been nonstop advocates for him.
‘Tens of thousands dying in hospital from kidney failure linked to dehydration
NHS officials calculate up to 42,000 deaths a year could be avoided
NICE issuing guidelines to help staff prevent deaths from condition
Estimated a fifth of patients attending A&E every year suffer from the illness’
[Dying of thirst: socialized medicine’s idea of death with dignity.]
‘it’s also interesting he does not want his name to be known nor will the press release it.’
Completely false. It was the god-complex judge who ruled the dr’s name had to be withheld. Perhaps she was afraid the dr’s credentials didn’t play into the NHS narrative.
“The judge in the infamous Charlie Gard case has allowed the name of the expert neurologist who thinks experimental therapy will help the infant boy to be revealed. The expert is none other than a Harvard-trained neurologist who is a professor at the prestigious Columbia University.
Michio Hirano, MD, is a Professor of Neurology at Columbia. Hirano serves as Chief of the Neuromuscular Division, Co-Director of the CUMC Muscular Dystrophy Association clinic, and Director of the H. Houston Merritt Center for Muscular Dystrophy and Related Diseases. He evaluated patients with myopathies and other neuromuscular disorders. Dr. Hirano received his B.A. from Harvard College and M.D. from the Albert Einstein College of Medicine. At the Columbia University Medical Center (CUMC), he did his neurology residency training and a post-doctoral fellowship in neuromuscular genetics under Drs. Salvatore DiMauro and Eric Schon.”
http://www.freerepublic.com/focus/f-chat/3569185/posts
May be but it is as wrong as rain. All you do is defend the unjust and immoral tyranny of socialist England because they have the power to execute their tyranny. FK ‘em.
If there’s no way for them to get their baby outta there (if there was no way to save their baby, they wanted to at least take their baby home and let the end happen there) without being arrested for murder, I hope that couple leaves England for the U.S. just as soon as they can after their baby is gone.
England and other socialist countries are poster children for why we should fight against socialist tyranny and death and fight for restoration of our Free Constitutional Republic.
Since another government is involved, ie the USA, it can be viewed as a foreign relations matter as well.
Therefore the Queen and PM May can have some say.
They may have to wait until their court rules, but they are not without power to intervene.
We agree one hundred percent
Are you sure he is not constantly under sedation?
Again, whatever procedure is the best for Charlie and won’t cause him additional suffering is what I wish for the little guy. No one should be subjected to experimental medical procedures if there is no hope, no precedence history, and medical opinions are sharply divided.
Like I posted before, if the parents have the means (or the insurance) to fund any treatment they desire for their child, that must take precedence over government orders or even the Pope.
But I still wish, regardless of what the parents want, that what ever is best for baby Gard overall, is what should happen.
Apparently they’ve got private money now. Licensed, accredited doctors and institutions willing to treat Charlie. Damned if I know how the heck the UK can hold Charlie prisoner given all that.
To my mind, this isn’t about a specific care regimen, rather who decides for Charlie.
The President offered to help in whatever way possible—that involves another government.
If the treatment has been used on other kids, how is it “completely untested”?
There are quite a few issues going on with this case.
The primary issue is that there is *no* indication of what the parents are proposing the "treatment" should be. Not a single article has published a single detail specifically linked to that case that would allow me to make any kind of informed judgment as to what is going on. The term that has been used, "nucleoside bypass therapy" is completely nonsensical from a scientific point of view. In fact, it is that term that has led me to suspect that the parents actually found some quack who has enough knowledge about scientific terminology to be able to throw words around as if he is actually knowledgeable on the subject. Word salad using fancy $15 words is still word salad.
I've seen nothing more than speculation about what the "treatment" will be. Well-meaning people have linked medical reviews of extremely early drug development efforts at treating mitochondrial deficiencies of various types. Those early development efforts are a good two decades out from being brought to the clinic--and the chance that they will pan out is low, given that only about one out of every hundred or so drug candidates ever makes it past early animal testing. (Drug development pipeline: in vitro, in cells, rodent/fish testing, primate testing, human testing in phase 1 safety, phase 2 dose-finding, and phase 3 efficacy. In the best case scenario, this takes at least a dozen years... real world conditions, it takes far longer.)
The issue about what kind of treatment these other kids who have a *different* mitochondrial disease have received is closely related to the second issue. Have these kids received this treatment in the context of a clinical trial conducted with IRB review, in conjunction with the FDA, with good solid scientific grounds on which to believe that the treatment might have beneficial effect? Or is this just something thrown together by some maverick physician who really knows nothing about clinical trial design or how to assess data, and the parents are convinced they see improvements because of a displaced placebo effect? If the latter, then how do we really know that whatever is being given these kids is safe and is not causing them pain or discomfort? And how do we know, given the lack of details on what has been proposed to try on Charlie, this is the same treatment?
The last issue is one I mentioned above: that the kids who have reportedly been treated for a mitochondrial disorder have a *different* disease than Charlie. While visible disease symptoms may be similar, on the biochemical level these diseases are very distinct. So, even if there were an FDA approved drug for tk2 deficiency, and it had a well-defined safety and efficacy profile, it could still be useless for Charlie because its mechanism of action is completely ineffective against the defective RRM2B enzyme in Charlie's mitochondria. Or here's a real-world analogy: if both you and I have a broken front door, the fix for my door won't necessarily work on your door. If I try straightening the hinges because doing that worked for your door, it won't help my door if the problem is that a spring in the latch mechanism has sprung.
I saw this with a family member who could not let her husband go.....he was unrecognizable when she finally accepted there was no hope. A dreadful thing to watch.
The barrier in the brain is technically called by the unimaginative "blood-brain barrier," or "BBB." It's a very real challenge for people who try to develop drugs for brain conditions. Experimentally, a drug can work wonders to prevent certain kinds of damage in cells and in tissues outside of the brain--but it does absolutely nothing to stop brain damage because the BBB keeps it out.
It is sad when someone is in a state of denial, like your family member. I understand the hope that the afflicted loved one will get better and live a decent life, but we have to understand that medical science can only do so much. Little Charlie is terminally ill, and the sad truth is that there is nothing that can be done about it. Even if, by a long shot, some treatment were used to mitigate the fatal defect in the mitochondria, it would not cure the illness and certainly not undo the considerable brain damage. At best, it would extend his life. At best, I say--but that is a matter of opinion. There is a point at which terminally ill people do not want anything to prolong their lives. Who is to say that Charlie has not reached that point, since he cannot communicate in any fashion?
I really do understand the parents' pain. I think they are so wrapped up in this that they really are convinced that they are doing everything in Charlie's interest, when it is really their own interest they are serving. Charlie is in God's hands.
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