I have read about this case. The "treatment" they want for the child in the US is NOT for his particular disease, and he is also far too affected to really benefit from it. I think there comes a point when the hospital needs to give the parents a wake up call...this child is not going to improve. At what point does "preserving life" move to keeping someone alive who has no chance for any meaningful recovery?
Now...I've made that sort of decision three times in my life. The first was with a child of my own. 28 week preemie, on day 11 of life, child suffered a grade 4 bilateral brain hemorrhage. As long as life support was provided (ventilator, various medications and TPN feeding), the child would "live". However, if life support was stopped, the child would die. Second, 78 year old woman suffered a series of strokes that left her comatose (persistent vegetative state). Blind, deaf, screaming out in pain as her muscles contracted and spasmed. There were two choices to make. The first, "let nature take its course" by withholding nourishment OR subject the woman to kidney dialysis, the forcible introduction of an NG feeding tube to continue life. Third, 95 year old woman in end stage heart failure. She had dementia, was totally unaware of her surroundings. Choice was again, "let nature take its course" or take her to surgery to implant a pacemaker.
There comes a time when the parents and/or relatives of the patient must be made aware that what they're doing is NOT the proper care...I have no problem with the hospital saying that the child really needs to be let go to let nature take it's course.