It’s such a sad, and complicated, case.
At the core is a child with an irreversible and non-survivable illness. I wholeheartedly agree with a previous poster (I’m sorry; I can’t remember your username) that it is so much easier to will a family member to live when they have never experienced independence, as it’s easy to view them as not having lost any abilities or freedoms. Comatose children with this degree of damage turn into comatose adults though, and I worry that Alfie’s parents are in such a present-orientated state of ‘survival mode’ that they cannot imagine a future either without their little boy, or where their little boy is no longer a baby and the degree of damage becomes increasingly marked.
I feel for his family, I really do. Whilst their choices aren’t the ones I imagine I would make (I made an advance decision at the age of 27 refusing life sustaining treatment if I permanently lost mental capacity), I realise I have no way of knowing unless I ever find myself in their situation. There can be no doubt that Alfie has a family who are absolutely besotted with him, and are true to their word of doing all they possibly can for him.
However. There is a failure for them (and, by extension, ‘Alfie’s Army’) to realise that this is not a case of a medical error. I’m a medic, and I appreciate that doctors are far from omnipotent. I myself have made well intentioned mis-diagnoses and mistakes - it happens. This is not a case of “my GP said it was X and then a consultant said it was actually Y”: the people making Alfie’s diagnosis, or rather prognosis, have access to the best technology and research available, have consulted several other experts in neurodegenerative conditions, and have carefully considered all possibilities. It’s understandable for the parents to try to escape their reality through whatever loophole or miracle they can imagine, but it’s downright cruel for the ‘Army’ to fuel them.
I also anticipate issues with Alder Hey physically removing the ET tube, and would expect there to be a security presence to prevent family from blocking staff.
It’s a tragic case for all involved, and no-one wins.