Julianna Snow of Portland, OR is 5 years old. She can't go to school, walk, or even eat. She spends her days in a wheelchair that she cannot push herself. At dinner with her family, her father, Steve Snow, gently rubs bites of whatever her brother and parents are eating against her lips so that she can have a taste. Julianna has Charcot-Marie-Tooth disease , a progressive, incurable neurodegenerative illness that affects the nerves outside the brain and spinal cord — and she's decided that the next time she has an infection, she won't return to the hospital. This will likely lead to her death.Something as simple as a cold could kill Julianna by developing into a severe case of pneumonia, and even if she were to survive such a case, her doctors say she'd likely remain sedated and tethered to a respirator for the rest of her life. Julianna's mother, Michelle Moon, shared on the blog The Mighty that Julianna was admitted to the intensive care unit for respiratory failure three times in 2014. Now, Michelle is speaking out about Julianna's decision not to go to the hospital the next time she becomes sick, though Julianna knows this means she will "probably go to heaven" instead. And Michelle and her husband Steve plan to respect that choice.