I don't think there's a one size fits all approach here because all children are so different and as moms we're all different. I don't see it as a black and white issue, a right vs. wrong. I think the answer is just so individual.
The answer lies in your heart. For us, with our son we feel like we can't stop until we have an answer because WHAT IF there is something treatable. Or what if there isn't now but there is in 5 years? We know he has mitochondrial dysfunction, possibly mitochondrial disease, but without a genetic mutation we don't know that it isn't possibly caused by something else. What if that something else is treatable?
Now, at the same time I will also not put him through a menagerie of tests simply to satisfy myself. For us though I feel like I cannot rest until we've exhausted all of our options in terms of possible treatment. I don't believe either that cure for Mito or Epilepsy will be available in Emeric's lifetime but I don't give up hope either because I can't. I have to hang on to something or I feel like I have nothing. Emeric is stable and yet I think about death frequently with his situation. It probably isn't warranted as his issues at least at this point aren't life threatening but I know the uncertainty of life itself and especially kids like this with complex, undiagnosed medical issues.
I think we would take some measures to keep Emeric alive. If he needed a G-tube I would do it although if it didn't help I don't know that I'd keep pushing for more and more. If that makes sense. I guess I really don't know because I'm not there. I would probably want to rescusitate if there was a chance for a good quality of life. If not then I would also sign a DNR.
For me it all depends on quality of life. If there are things I can do to intervene and they will help his quality of life then I'm all for it. If it wouldn't change anything then I'd probably say ok, let's not do it.
In terms of quality of life I think Reese seems to have a very high quality of life in terms of being well loved, cared for, not in obvious pain, etc. and that is so important.
I don't know if that was what you're looking for. Sort of a lot of mumbo jumbo so I'm sorry.
You are an amazing mother Nena. A mother that chooses to intervene does not love her child anymore than a mother that chooses not to intervene. In fact, in some instances I think it's much more selfless and loving to let a child pass rather than keeping them alive just because we can't bear to lose them. That is how I feel at least.