Thank you very much.

Even after following your link. No reference to child abuse that I see.

I thought the connection to Charlie Gard would have been easily made.

Aside from which, I don't think of child abuse when parents are desperately seeking a cure for their child. Political exploitation by others, perhaps - but child abuse doesn't come to mind when I think of Charlie Gard.

So do many others. I do think the parents were in a difficult and devastating situation. That said, I don't recall anyone(with medical authority) saying his life could be saved.

as you might imagine, and not all of the relevant factors are published in the media.

My daughter has a chronic, progressive (i.e. ultimately fatal) liver condition for which there is no medically recognized treatment, and no cure. The closest is a liver transplant - and some with her condition have gone through as many as 5, because all a transplant does is to give whatever is causing the destruction a new playground in which to play (and to destroy).

There is an experimental treatment (that no one, with medical authority - in the sense you seem to mean it - would pay for my daughter to be transported to another country to access). Fortunately, we were able to access the treatment in this country - and have enough money to cover the expenses. It was medical, rather than surgical. None of those favorable conditions were present for Charlie Gard's parents - making their choice infinitely harder, and more controversial because it played out in the public eye.

When you live in the world of fatal conditions that have no approved medical treatment, as a parent you have to weigh the benefits (potentially life-saving, or life prolonging until a real cure is found - even though it has not yet been proven) versus the detriments:
financial, medical (i.e. do you have to give up a known, effective treatment to try it), and bodily (how much pain, for how long, etc.). Believe me, the decision is not an easy one - and because there is inherently insufficient data - nearly always likely to draw judgment from people who have never been put in that position.

Had I been in the shoes of those parents - and had I done the level of scientific research I did for my daughter's treatment and believed that the benefits outweighed the detriments - I might have made the same choice. Since I'm not in their shoes, haven't done the research, and know only what was published in the media, I don't know, - I know from first-hand experience that I have no right to judge them. So a story of a child receiving appropriate medical care overseas does not trigger thoughts of "child abuse," or parents with a "less than savory agenda" in regard to the parents of a child for whom there is no medically recognized treatement.

The politicians who took on the case for the purpose of scoring political points, on the other hand, are reprehensible - but you are leveling charges of child abuse against the parents. I hope you are never in a position in which you have to make a choice between allowing your child to die and what others, such as you, might allege is child abuse.

Tuskegee, NAZI Germany are the most famous incidences and it is a matter of serious medical and basic human ethics to give such things considerable thought in that context when they are on the public stage. If we don't keep such things in check at a time of advances in genetic technology, we could head down very ugly pathways.
I appreciate the heartbreak individuals and families whose children have health difficulties face, a culture that operates with a presumption that all human imperfections can and should be fixed imposes damaging stigmas and rejections on existing people. The experiments I mentioned and the eugenics movement were driven by that notion and outright hate directed towards such people.
If we do not become aware of it, we risk the possibility of such practices and policies being conducted behind closed doors and the even worse possibility of expansion.

I am talking about fatal conditions for which there is no known cure, or even treatment - and parents (or individuals) making rational choices about experimental care based on researching all of the options, weighing benefits against detriments, and making the best decision they can for their child (or themselves), when such medical care is not yet rigorously proven to work.

I am talking about making rational, information-based choices between two unreasonable options: The death of your child, or a treatment of unproven efficacy.

I know the heartbreak of having a child with an ultimately fatal disease, for which there is no known cure or even treatment. We found an option that looked medically promising, but the efficacy of which was not yet proven. We engaged in solid research about the pros and cons of pursuing that treatment, and ultimately sought that option for our child. We had the luxury of having a controversial, but minimal risk experimental option, having sufficient medical knowledge to research it and evaluate the strength of the evidence pro and con, having no effective treatment available (so she did not have to forfeit proven therapy to try an unproven one), having money to afford it (so we didn't need to turn to crowdsourcing to fund it - with the attendant risk of busy-bodies using it for political gain or calling it child abuse), and a physician willing to administer the treatment as part of a small
(< 10 person) trial.

When your child is in the position of having a fatal condition for which there is no known cure or even treatment, you have the option of doing nothing - or, if you are lucky, trying an experimental treatment that offers hope, but no guarantee. If no one ever experiments on humans with unproven treatments, there will never be new treatments and cures. That is scientific reality.

Using an experimental treatment for a fatal condition - as Charlie Gard and my daughter have - has nothing to do with fixing a human imperfection - or stigmatizing "less than perfect" humans. It is simply making the choice between certain death and a chance at chance at life. Sometimes, after weighing the options, the former is the better choice, and sometimes the latter is. But, when the choice is made responsibly, neither choice is child abuse - the allegation to which I responded.

I don't know the details of the Charlie Gard case, except to the extent they were publicized - largely for political gain, and neither do you. Absent such information it is not our place to presume they made the decision to seek unproven treatment irresponsibly, a presumption inherent in calling it child abuse.

For medical procedures to be approved, they require systematic research with large sample sizes. When it involves willing participants who have given informed conscent I have no comment. When it involves parents consenting for children for their own benefit, the territory is murkier and ethically questionable.

The approval of a new medical treatment does not start with large sample sizes - especially when you are talking about procedures which cannot be run thorugh double blind studies - rather than medication. Even for medication, large samples are, the end point - not the starting point. For diseases or conditions found only in children, that means starting small, with children. For rare conditions, large samples sizes are impossible - even in the later stages of testing. That is just the reality of rare diseases in children. NO progress will be made without parents making the best, informed, decisions they can for their children - when the choice is certain death, or the unproven hope for a treatment (or cure).

I made the decision to treat my child with an experimental treatment based on fewer than a dozen case studies, stemming from the accidental discovery in a single child that a treatment for a different disease seemed to put the chronic, ultimately fatal, disease my daughter has in remission. 100% of the children in those case studies responded. Most went completely into remission - which had NEVER been achieved by any prior treatment. (The average time from diagnosis to death or transplant is 10 years.) By the time my daughter was diagnosed a decade later, a single study was being conducted with fewer than 10 participants - my daughter being one of them.

The treatment is still controversial, and still unproven by medical standards becasue the rare nature of the disease prevents the collection of data from large, double-blind, studies. In addition, prejudice against long-term use of the medication involved, and the particular susceptibility of children to this treatment, makes it challenging to even perform smaller studies, let alone larger ones. That said, of the children treated prior to my daughter, virtually all are still in remission nearly two decades later. As I noted, remission is unheard of in this disease that marches inevitably toward death or transplant.

If you have not been in that situation, and have not had to make the decision (along with the team caring for your child) - you have NO right to pass moral judgment.