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Charlie (update)

The problem about writing about topical issues is that they can change dramatically overnight. And in this case, the sad story of Charlie is drawing to its conclusion. I certainly wouldn't want to be in the position of his parents making this decision, however I think that to give up the fight is the right way forward.

The judge said "The world of social media doubtless has very many benefits but one of its pitfalls, I suggest, is that when cases such as this go viral, the watching world feels entitled to express opinions, whether or not they are evidence-based."
I'm surprised the judge seems surprised at what has happened. Social media is a place where pretty much anybody can spout any ill-informed opinion that they feel like... and yes, I could my blog in this (although in my defence I did a few hours research into what is actually wrong with Charlie, and the to-and-fro legal cases, and then I spouted... ☺). After all, social media was asked to name a ship and the reply was "Boaty McBoatface", need I say more?
That said, for all the bollocks spouted on all the websites, it is worth remembering where that £1.3 million came from.

But perhaps the most important part of this entire story is not whether or not the Pope and POTUS got involved, but rather this quote from Charlie's parents "Tragically having had Charlie’s medical notes reviewed by independent experts, we now know had Charlie been given the treatment sooner, he would have had the potential to be a normal healthy little boy".
There is likely to be a lot of discussion in the future, both professionally, and of course on social media, asking who these "independent experts" are, their provenance, and why they seemed to suggest the direct opposite of the Great Ormond Street doctors. It isn't in the interests of GOSH to refuse to treat a sick child, and certainly I wonder how this episode will affect them in the future (it is reported that people outside GOSH demanded "justice" and shouted "Shame on GOSH, shame, shame, shame - Charlie's Army never sleeps"). The thing is, from what I have read, it is not clear to me if the proposed medication - should it work - would stop the disease, or slow down its effects. What is much harder to swallow is the idea that it could reverse the damage. And yes, by the time Charlie made it to GOSH and was diagnosed, damage had been caused. The ten percent recovery doesn't sound like "a normal healthy little boy"; Wikipedia reports "There is currently no curative treatment for any form of MDSs, though some preliminary treatments have shown a reduction in symptoms" which means medications can make things a little better but there is currently no magical cure.
It stands to reason that the parents latched on to this ray of hope... wouldn't you in their position? But if these things were in conflict with the doctors at GOSH (who the judges agreed with), why was that? Was there something to be considered, or was it a false hope?

Somehow, I don't think this is the end of this story.



Yesterday I said I wasn't going to release Manga yet.

Late in the evening, my RISC OS allocation arrived. The application name "Manga" is now registered to me (that means if it should clash with another application called Manga, it's the other application at fault).
I modified Manga to save its state into Choices:Manga instead of keeping it all within the application folder.


Go get your copy
(for RISC OS!)



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