It was apparent something was wrong with Julianna Snow when she was just 9 months old. Her mother, Michelle Moon, a Portland, Oregon, neurologist, grew concerned when she noticed her daughter couldn’t sit up.
Eventually Julianna, now 5, was diagnosed with Charcot-Marie-Tooth disease, an incurable nuerodegenerative illness. At this point, a simple sickness like the common cold could kill her.
Julianna has never been healthy enough to attend church with her family, according to CNN. She learned about heaven from her parents.
Michelle asked Julianna when she was 4 if she would rather go to the hospital or stay home next time she falls ill. Julianna said she’d rather go to heaven.
Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?
Julianna: Not the hospital.
Michelle: Even if that means that you will go to heaven if you stay home?
Julianna: Yes... I hate NT (naso-tracheal suction, where a tube was placed down her nose into her lungs without sedation). I hate the hospital.
Michelle: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
Michelle: 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.
Michelle: That's right. You will not be alone.
Julianna: Do some people go to heaven soon?
Michelle: Yes. We just don't know when we go to heaven. Sometimes babies go to heaven. Sometimes really old people go to heaven.
Julianna: Will Alex (her 6-year-old brother) go to heaven with me?
Michelle: Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone. Does that scare you?
Julianna: No, heaven is good. But I don't like dying.
Michelle: I know. That's the hard part. We don't have to be afraid of dying because we believe we go to heaven. But it's sad because I will miss you so much.
Julianna: Don't worry, I won't be alone.
Michelle: I know. I love you.
Michelle: Yes, I love you madly. I'm so lucky.
Julianna: And I'm so lucky.
Julianna: Because you love me madly.
Julianna’s parents have decided to let her stay at home the next time she falls ill, which could be the last time.
"She made it clear that she doesn't want to go through the hospital again," Michelle told CNN in an email. "So we had to let go of that plan because it was selfish."
Some criticized the family’s plans due to Julianna’s age -- life and death decisions like this are difficult for adults to contemplate and act on, and the decision may be exceptionally burdensome for a child.
"Unbelievable that any parent would think a four year old is able to understand or make a decision on life," one mother commented on an article written by Michelle for The Mighty. "Clearly that mother asks her leading questions. This article sickens me. I have a child with a chronic illness as well."
Still, Michelle stands by her daughter’s choices.
"She's scared of dying, but has, to me, demonstrated adequate knowledge of what death is," Michelle wrote on her blog, according to CNN. "She 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."
Criticism of the family’s decision goes far beyond an online comment section.
"This doesn't sit well with me. It makes me nervous,” bioethicist Art Caplan told CNN. "I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there's zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn't really develop until around age 9 or 10."
Despite the controversy and sobering conversations Michelle and Julianna have had, she’s still a normal child in some ways. Julianna had her first picnic in October, and she likes to wear sparkly clothes and princess costumes.
According to Michelle’s blog chronicling Julianna’s health struggles, Julianna has not been hospitalized with an infection in a year.