Having had to deal with the daily effects of Parkinson's and dementia on my poor dad, I cannot imagine what this baby is going through.
Most of my time dealing with my dad for the three years up to August 2016, was concerned with my Dad's throat. Can he breath? Yes, because I made sure of that. Can he eat? Yes, because I made sure of that too. But it was very, very hard.
The effects of muscle weakness on the body are devastating and there are quite a few diseases like Parkinson's and Charlie's which cause muscle weakening.
I only knew the true effects of muscle damage on the last day of my Dad's life when I saw a chest xray of the pneumonia that was about (didn't know at the time) to kill him. As the doctor put it, forget the pneumonia, even if he (my dad) gets better, his lungs have been destroyed by Parkinson's. They never showed me the results of earlier tests they did which showed the damage of muscle weakening. I got the message, eventually...
Someone needs to slap these parents. Sorry, but it has to be said. Nothing can change what it is.
I can't express adequately the respect I have for you in your care for your dying father. It must have created experiences in your mind that are life changing and will be with you forever, not just about the sick, the vulnerable and the dying, but about other things in the world. I'm sure you have a lot of advice and understanding for others in this situation.
I saw on the news this morning that the new scan for Charlie is not good news. The parents have had another fit of rage. I hope the judge can bring this to an end soon as fighting like this over a child who has no hope is becoming reprehensible. And GOSH shouldn't have to be slapped all the time when it has some of the world's best doctors dealing with Charlie's condition as well as just plain having some of the world's best doctors and staff. I find the whole thing sad and contemptible. It has been turned into an hysterical show of social networking boosted venom.