Parents Let Terminally Ill 5-Year-Old Daughter Make Her Own End-Of-Life Decision — And Choose 'Heaven' Over Hospital
A 5-year-old girl with a rare, incurable disease told her family that she'd rather go to heaven than go back to the hospital — and her parents are honoring her request.
Michelle Moon and Steve Snow's daughter Julianna has a neurodegenerative illness called Charcot-Marie-Tooth disease, which renders her coughing and breathing muscles so weak that she will likely end up sedated on a respirator with very little quality of life.
What Julianna's religious parents have chosen to do has sparked a huge debate: they asked their daughter if she would want to go to the hospital the next time she falls ill, or if she wants to stay home — where she would die and "go to heaven."
Before asking her daughter's thoughts on the matter, Michelle searched for guidance about having end-of-life talks with a young child.
Finding nothing, she contributed to The Mighty — a website where people write about dealing with disabilities and diseases — to post the discussion she had with Julianna in which she stated she didn't want to go to the hospital again.
The conversation went as follows: