Julianna Snow, 5, Wants to Go to Heaven Instead of the Hospital

Julianna Snow wants to go to heaven instead of the hospital, and the five-year-old victim of an incurable disease and her parents have found themselves in the middle of an end-of-life debate.

Julianna is suffering from Charcot-Marie-Tooth disease, a neurodegenerative illness that leaves her susceptible to deadly pneumonia because her coughing and breathing muscles are too weak to rid her body of infections as simple as a cold, according to CNN.

The Oregon native has gone through "countless procedures" over the past 18 months and doctors fought to keep her breathing, according to People magazine. Those hospital trips would sometimes come "weeks at a time," wrote her mother Michelle Moon in a blog posted on The Mighty,  a website created for families struggling with disabilities, serious diseases and life and death issues.

"… Julianna made it clear to us that she does not want to go to the hospital again," Moon wrote on the blog in May while talking of the family's decision to enroll for hospice care. "Like so many kids who have had to face life-threatening illness, she is wise beyond her years – but she is still only 4 years old. I do not think that she will survive another illness, especially without aggressive intervention."

While some are supportive of the family, others expressed surprise about the end-of-life discussion the parents had with someone so young.

"I am 38 years old and I want you to know that I live each day a lot like you do," Emily Wolinsky wrote in a message to Snow on the blog. "… I've been in the hospital too, and it's no fun. I hear heaven is a lot of fun, but the BEST place for me is to be here with my family and friends on earth."

At least one blog reader, a mother of a child with a chronic illness, was more critical, according to CNN, saying: "Unbelievable that any parent would think a 4-year-old is able to understand or make a decision on life. Clearly that mother asks her leading questions. This article sickens me."

The backlash prompted a second column from Moon in June to talk about the family's decision.

"We have had more conversations, mostly initiated by Julianna," Moon wrote. "She's scared of dying, but has, to me, demonstrated adequate knowledge of what death is. …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."


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