An Oregon family has told their dying five-year-old daughter, who has endured several traumatizing hospital stays, that she can choose whether to go to heaven or back to intensive care the next time she falls seriously ill.
Julianna Snow has suffered since birth from a neurodegenerative disorder called Charco-Marie-Tooth Disease, or CMT, which robs her of the ability to eat, or to run and play like other children.
The inherited neurological ailment targets limbs and nerves, and Julianna now has little or no movement in her arms and legs and her breathing muscles are rapidly deteriorating, according to The Mighty, a blog that Julianna’s mom, Michelle Moon, contributes to.
In a post, the mother recounted a conversation she had with Julianna, who was then four.
M: You don’t want to go to the hospital, right, J?
J: I don’t like NT (naso-tracheal suction, the thing she hated the most from the hospital).
M: I know. So if you get sick again, you want to stay home?
J: I hate NT. I hate the hospital.
M: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
J: (nods no)
The mother assured her daughter that she would be joined in heaven by her family.
Doctors have told the family that the next time little Julianna comes down with a cold, she could die from pneumonia, Tribune Media reported.
Reached by INSIDE EDITION, Moon declined comment.