PerthDomer
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This is separate from what's going on in Canada. There are a number of awful and incurable diseases that afflict kids and different countries deal with them differently.
In the UK generally avoiding pain/futile care when something incurable and progressive afflicts a kid takes precedence.
In the US they usually ignore the kids interest in that scenario and default to the parent.
In Italy they generally make withdrawl/redirection of care very difficult and hard to do.
This kid has a mitochondrial disorder. That means every organ, but especially the metabolically active ones are impacted. These disorders as a rule get worse. The cutting edge treatments don't make you better, but generally slow the decline.
The kids frequently have exaggerated responses to pain. They get a lot of seizures. They slowly lose control of their bodies and need a tracheostomy/gtube. Eventually the seizures burn their brain away which fortunately solves the pain problem, but takes away their ability to interact with the world.
Generally in these circumstances the family fixated on how their kid used to be when healthy. Those are the pictures/videos you see from them. The hospital can't say much in the press due to privacy laws. You'll frequently get an outside center that says they have some cool experimental protocol they think the kid is perfect for and then once they see the records they say nope. Never mind.
In the US or Italy this kids fate would be hanging out in a long term care facility and getting periodic admission to the ICU with lung infections until they inevitably die. In Britain they say it's in the kids interest not to pursue more interventions to get to that point and they withdraw care.
If you look at these cases in the UK they aren't getting more common and generally follow the same script.
