@MorningCuppa
Maybe it's because I'm on my phone I can't see the pictures?
Also, that's quite alright! Again, most people have their hearts in the right place - they are saddened and worried about the wellbeing of a poor little boy. It's just so easy to come to a misunderstanding. Hospitals do make mistakes sometimes but there are also some things which seem to be obviously a "mistake" or "harm" or "neglect" when in fact there are many other explanations that would (could) not occur to those who do not work in that setting.
Alfie is very sick and it is only because of the miracle of modern technology and continuous intensive care that he is alive at all. When you really think about it, medicines and machines are breathing for him, feeding him, acting to prevent fatal seizures, regulating his temperature, trying to keep his skin intact... In non-developed settings (and throughout history) simple illnesses like diarrhoea and bronchiolitis kill something like at least 1/5th of all children under 5 and any minor disadvantage is very likely to result in death under the age of 5.
Obviously, the change is brilliant (an understatement!) but the sheer power of medicine to keep people alive has also allowed us to create scenarios where the ethical implications become very difficult. I don't think our society is able to cope with the concept of natural death, sometimes even in the extremely elderly.
I really worry that cases like these put pressure on parents to fight for prolonged death or else feel somehow responsible for their child's passing. Just an awful scenario really. Ideally a child known to have a degenerative metabolic disease should not be ventilated if failing to breathe on their own is the natural progression of their disease. But there is sometimes uncertainty or the parents are not yet able to accept what is happening. It feels as though he Alfie's parents will never be able to accept the reality of his disease.