If a parent can't make the most intimate and personal decisions about trying to give their own baby a chance, however slim, then the state should just confiscate all babies at birth. There are states that did this very thing...Soviet Union, Mao's Red China, and Hitler's Germany. You are squarely on their side, whether or not you realize it.
One thing a lot of people don’t know is how much $ has been raised for Charlie. It’s over a million pounds. Meaning, it not only wouldn’t cost the NHS a dime for Charlie’s US treatment: it would save them $. He’d be out of their hospital and out of their system.
Under such circumstances there’s only one reason to insist that the baby must die: power. The NHS wants godlike power, and that necessitates withholding even a smidgen of decision-making prerogatives from the parents.