Since birth, Julianna Snow has suffered from an incurable neurodegenerative disorder that has had her in and out of the hospital, and has prevented her from going to the City Bible Church in Portland, Ore., where her family belongs.
Tribune Media Wire reported that when 5-year-old Julianna was 4, her family made her an offer: The next time she got seriously ill, she could choose to go to the hospital or heaven. There, they said, she would be able to eat without a tube, play and run— everyday activities other kids get to engage in but ones that Charcot-Marie-Tooth disease, or CMT, has robbed from Julianna. According to the National Institutes of Health (NIH), CMT is one of the most common inherited neurological disorders, affecting about 1 in 2,500 people in the United States. The disorder impacts the peripheral nerves, which are outside the brain and spinal cord, and supply the muscles and sensory organs in the limbs.
At first, Julianna's severe case of CMT debilitated her arms and legs, but now it’s targeting the nerves that control her breathing muscles, according to the wire service.
Doctors predict that, the next time the little girl gets ill with something as minor as the common cold, she stands the risk of dying from pneumonia.
In May, Michelle Moon, Julianna’s mother, shared her family’s story on The Mighty, a blogging platform for families coping with devastating disease and disability. In the post, she recounts a conversation with her 4-year-old daughter:
“Moon: You don’t want to go to the hospital, right, J?
Julianna: I don’t like NT [naso-tracheal suction, the thing she hated the most from the hospital].
Moon: I know. So if you get sick again, you want to stay home?
Julianna: I hate NT. I hate the hospital.
Moon: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
Moon: And it probably means that you will go to heaven by yourself, and Mommy will join you later.
Julianna: But I won’t be alone.
Moon: That’s right. You will not be alone.”
God also will be in heaven, and he will love her more than her parents do, Moon and Steve Snow explained to their daughter.
Following comments from some readers who criticized Moon’s and Snow’s decision to allow their young daughter to make an end-of-life choice, Moon posted a second time on TheMighty.com in June. In the post, she wrote that “She (Julianna) hasn’t changed her mind about going back to the hospital, and she knows that this means she’ll go to heaven by herself. If she gets sick, we’ll ask her again, and we’ll honor her wishes.”
The family’s decision has also raised concern among some bioethicists, such as Art Caplan, of New York University, who argued to the Tribune Media Wire that children don’t understand death until age 9 or 10.
“This doesn’t sit well with me,” he told the wire service.
But their choice has also drawn supporters, like Caplan’s former coworker Dr. Chris Feudtner, a pediatrician and ethicist at Children’s Hospital of Philadelphia, who disagreed with Caplan.
“To say her (Julianna’s) experience is irrelevant doesn’t make any sense,” Feudtner told the wire service. “She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna.”
According to the Tribune Media Wire, Julianna has not had an infection for a year, but her family is preparing for her death and Julianna is preparing for heaven.