Portland, Ore. — (USA Today) An Oregon family is allowing their terminally ill five-year-old daughter to make the decision of whether she wants to go to the hospital next time she is sick or stay at home and potentially die.
Julianna Snow, who has a neurodegenerative disease called Charcot-Marie-Tooth disease, which has caused her to become so weak that even a minor cold could become pneumonia, told her mother that she would rather go to “heaven,” according to CNN.
It’s unlikely that Julianna’s doctors could save her life if she becomes ill again, and if they can, she would likely be sedated and on a respirator for the rest of her life, the news organization reported.
In May, Julianna’s mother, Michelle Moon, shared the family’s story on The Mighty, a digital platform for people facing disease and disability.
With the grim knowledge of what Julianna’s future could look like, her parents decided to offer her a choice.
“Julianna made it clear to us that she does not want to go to the hospital again,” Moon wrote of her then 4-year-old daughter. “Like so many kids who have had to face life-threatening illness, she is wise beyond her years — but she is still only four years old.”
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