Julianna Snow

Julianna Snow, the little girl who touched millions with her approach to terminal illness, died Tuesday.

“Our sweet Julianna went to heaven today,” her mother wrote on a blog devoted to her daughter. “I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together.”

At 2 years old, Julianna was diagnosed with Charcot-Marie-Tooth disease, an incurable neurodegenerative illness. This disease weakened her immune system and made her catch pneumonia and colds easily and often. Anytime Julianna had an infection it made it extremely difficult for her to breathe and she would have to have painful procedures to remove the infection.

When she was 4 years old, her body was becoming increasingly weaker and her motor skills limited. 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. But her mind worked perfectly.

At the time, she was in and out of Doernbecher Children’s Hospital in Portland, Or. Doctors at Doernbecher told her parents that they would have to make some difficult medical decisions the next time Julianna had an infection. After doctors made it clear that death was imminent, parents Michelle Moon and Steve Snow asked Julianna if she would rather go to Heaven or the hospital the next time her condition got worse. Moon 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.

Michelle: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.

Julianna: I understand.

Michelle: (crying) -- I'm sorry, Julianna. I know you don't like it when I cry. It's just that I will miss you so much.

Julianna: That's OK. God will take care of me. He's in my heart.

Julianna was in hospice for the last 18 months of her life. During that time, she loved to wear princess dresses, make up elaborate stories and games, do arts and crafts projects with hospice volunteers and have her toenails painted. In a text to CNN, Moon said the end was very quick.

“She got very sick very suddenly and it was back to the same battle of helping her breathe,” Moon wrote. “This time, she didn’t bounce back – she got worse and worse and worse and was gone in just over 24 hours.” She died at home in her mother’s arms. Her mom believes this is what she would have wanted.

“We had the full support of hospice and we had the things we needed to keep her comfortable,” Moon said. “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.”

Her decision – heaven over hospital – was covered in CNN’s 2015 series Heaven over Hospital. Her story sparked an international conversation about what kind of care a child with a potentially deadly disease should receive, and whether a child she be consulted in the decision making.

“She was a remarkable little girl,” said Art Caplan, director of the division of medical ethics at New York University School of Medicine. “She taught me and others that even a child can become very knowledgeable about a challenging illness and can convey thoughtful and remarkable feelings about her illness and her ideas.”

In her blog, Moon wrote than she wants the world to remember her daughter as the “bright light” who “loved love and ‘everyone except the bad guys.’”

“Please do not forget her,” Moon wrote. “She lived, she was real, and she mattered.”

Ultimately, Julianna got her wish to die without medical interventions.

“She fought hard to be here, harder than I’ve seen anyone fight, with a body that was too frail for this world. She was so brave – and I hated that she had to be so brave,” Moon wrote. “Today she is free. Our sweet Julianna is finally free.”

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