Julianna Snow is dying of an incurable disease. She’s stable at the moment, but any germ that comes her way, even just the common cold virus, could kill her. She’s told her parents that the next time this happens, she wants to die at home instead of going to the hospital for treatment.
If Julianna were an adult, there would be no debate about her case: She would get to decide when to say “enough” to medical care and be allowed to die.
But Julianna is 5 years old. Should her parents have let her know how grave her situation is? Should they have asked her about her end-of-life wishes? And now that those wishes are known, should her parents heed them?
When she was 9 months old, Julianna’s parents noticed she couldn’t sit up steadily, something most babies can do around 6 months. At her first birthday, when children typically start to walk, Julianna couldn’t even pull herself up into a standing position . . .
This worried Michelle Moon, as a mother and as a neurologist. “The worst thing in the world for a neurologist is to not hit your milestones,” she says. “But I tried really hard not to overreact and freak out.” (Read more from “Parents Allow 5-Year-Old Daughter to Make End-Of-Life Choice” HERE)