That's true, (granted, I don't have kids, but..) you want to do everything you can to protect them and keep them safe. It probably has to change somewhat when it's clear that the condition is terminal. Making them happy and comfortable is probably the best you can do if they have a disease that will kill them.
I find this description of events around Sir Ramon compelling for several reasons... the generosity and effort put in by the SCA folks, particularly the knights, is heart warming. But the fact that the child also really seemed to "get it", and that it was his dream coming alive and he wanted to be chivalrous and brave, and sacrificed his pain meds so that he could be alert and active.
He truly was a knight. I'm glad to have had a chance to read about him. I only wish I could have been there to witness it, or to contribute.