I’ve been in the horrible position of having to agree to my child’s life support system being turned off so I’m in more of a position to judge than most. Even then, I’m not going to judge the parents over that because I’m not in their shoes. My daughter had been starved of oxygen and had suffered a cardiac arrest during the birth. She was incapable of breathing on her own or maintaining a heartbeat without cardiac massage so it was an awful but straightforward decision. I also have friends who had a boy who had something called Tay Sachs Disease, which is a degenerative neurological condition seemingly not dissimilar to the one Alfie has. He got progressively worse and died when he was 5 years old. It wasn't a pleasant pathway either. So I suspect that poor young boy hasn't any realistic prospect of having any sort of life that doesn't involve an early death. There's no known cure for his condition, which they're not even sure about, but there's a potential treatment that could possibly prolong his life for a short while.
Having been there, a part of me obviously has sympathy for the parents for the pain they're going through but another, far larger part of me thinks “What are you hoping to gain from this? Let it go”. Yet if they think there’s a hope of salvaging something then I also think that Alder Hey should say “Fine. If that’s what you want to do then do it. Let the Italian doctors come to get him and then he’s their and your responsibility”. Who are they doing this for - Alfie or themselves? I suspect it's the latter. Sometimes, however much it hurts, you have to listen to advice that may not be what you want to hear.
But no way should their supporters be impacting normal life at Alder Hey. That's completely out of order & I've lost all respect for the parents, who seem to be encouraging this, whether implicitly or explicitly. I can understand them wanting the best for their child but not completely abandoning their dignity to pursue that.