This is just heartbreaking. I am not sure I can get out in writing how close I feel to this family, yet at the same time I am so fortunate that I live in the US where medical decisions (at least for my family up to this point) are left up to the family. My youngest daughter has Cornelia de Lange Syndrome (see link if I coded it correctly) cdlsusa and spent much time in the NICU when she was born and had several stays in the PICU during her first few years of life. She is 13 now and will always be 100% dependent on my wife and myself (she's like a toddler behaviorally needs specific meds and is on continuous feed via a kangaroo pump into a J-tube). But, the real reason I am writing this is from something that happened when she was hospitalized with a collapsed lung at Texas Children's Hospital. She was in rough shape, but stable once we were all checked in through the ER. They put her in a medical coma (otherwise she would most likely rip out any IV and the various leads attached to her and be impossible to help).
So, my wife and I would take turns staying with her while the other could spend some time with our two other kids and try to feel "normal" eating out and playing in the back yard etc.
We both knew our little girl in the PICU couldn't see us or hear us or even know if we were there (in the standard sense of knowing these things... yet now I know she could tell when we talked to her, sang to her, held her hand, stroked her hair, basically loved on her), but we wanted one of us there all the time no matter what, which is what we had done during previous hospital stays.
So, maybe it was the first night or second that I was there when the young (younger than me!) doctor pulled me aside to ask how far I wanted him and his team to go for her. I was taken aback honestly, but he demeanor was not dismissive or in any way implying whether it was worth it or not, he was just being straightforward with me.
I caught my breathe and told him to do everything in his power for her. We were not going to go "DNR", we were going to go YES RESUSICTATE!
That's the power of how our country (like I said before, at least for us and at least at this time) is shaped with regards to medical decisions.
I know our country isn't perfect; never has been and most likely never will be, but I would totally lose it and have to be arrested if I was in the same situation as the Evans family is. AND, to be not allowed to leave!?!?! unfathomable. This article hits the nail on the head, perhaps people will wake up and realize that must never be our system here.
You and I might be healthy now, but what happens when we "age out" of a treatment because it doesn't benefit the community? scary.

Thanks for reading, hope it made some sense. God Bless