Heaven over hospital: 5-year-old Julianna Snow dies on her terms

Updated: 2016-06-16 11:45


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Heaven over hospital: 5-year-old Julianna Snow dies on her terms

Julianna is in hospiece.[Photo/Grab from CNN video screen shot]

WASHINGTON - Julianna Snow, the 5-year-old girl who sparked an international conversation about wrenchingly difficult decisions for terminally ill children, died Tuesday.

Julianna was born with an incurable neuromuscular disease. Moon and her husband, Steve Snow, consulted with their daughter last year about whether she would want to go to the hospital if she were to have a potentially fatal complication.

The other choice was to forgo care and go to heaven. Julianna chose heaven, and her parents, in consultation with Julianna's doctors, abided by her decision.

That decision -- heaven over hospital -- started a conversation about what kind of care a child with a potentially deadly disease should receive, and whether the child herself should be consulted in the decision making.

When she was two years old, Julianna was diagnosed with Charcot-Marie-Tooth disease, a neurodegenerative illness.

By the time she was four, she'd lost the use of her arms and legs. Her swallowing muscles were so weak, she had to be fed through a tube in her stomach. Her breathing muscles suffered too, and she was in and out of Doernbecher Children's Hospital in Portland, Oregon.

But her mind worked perfectly.

That's why her parents consulted Julianna, then only four years old, when doctors at Doernbecher told them they would have to make some very difficult medical decisions.

Early last year, Moon asked Julianna what she wanted to do and wrote about the conversation on her blog.

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.

Michelle: And you know that mommy and daddy won't come with you right away? You'll go by yourself first.

Julianna: Don't worry. God will take care of me.

Julianna was in hospice for the last 18 months of her life. Moon said the end was very quick.

"We had the full support of hospice and we had the things we needed to keep her comfortable. She died at home, in her princess room and in my arms. I don't know that she would have wanted it any other way."

Julianna's story touched millions of people. Most readers and viewers voiced support for the family's decision, although some people with neuromuscular disabilities disapproved and started a Facebook campaign called "Dear Julianna."

In her blog, Moon wrote that she wants the world to remember Julianna as the "bright light" who "loved love and 'everyone except the bad guys.'"