'God will take care of me': Incurably ill 5-year-old chooses Heaven over hospital

'He's in my heart.'

Five-year-old Julianna Snow was diagnosed with an incurable neurodegenerative disease called Charcot-Marie-Tooth disease. When asked if she were to fall ill again, would she want to go to the doctor or stay home, she chose "heaven."

LOS ANGELES, CA (Catholic Online) - Julianna's mother, Michelle Moon, said her daughter answered very "fast and clear" when she chose heaven over another hospital stay.

Moon had asked Snow, "Julianna, if you get sick again, do you want to go to the hospital again or stay home?" Her daughter replied, "Not the hospital."

Moon asked, "Even if that means that you will go to heaven if you stay home?" To which Julianna answered simply, "yes."

When Moon asked her, "And you know that mommy and daddy won't come with you right away? You'll go by yourself first," Julianna said, "Don't worry. God will take care of me ... He's in my heart."

What Julianna knows about God, she learned from her parents since her health was never enough for her to make it to Sunday school at City Bible Church in Portland, Oregon, where her family attends.

Julianna's father, Steve Snow, told her heaven is where she will get to play, jump, run, eat real food and do everything she is currently unable to do. She will also have a chance to meet her great-grandmother who shared Julianna's love for sparkling mismatched clothing.

Both Snow and Moon told Julianna she would make it to heaven before they, or her brother Alex, would. 

The disease initially targeted her arms and legs, but has progressed to debilitate the nerves that control her breathing and muscles.

On her blog, Moon wrote, "She has very little movement below the shoulders now, so someone sits at her bedside until she drifts off ... She needs me to take care of all her physical needs. Her physical body is profoundly weak, but, verbally, she is like an elite gymnast. Her words are rich and precise. She uses them to entertain, engage and to show her love. Above all, she wants to be understood. This is harder now. Her disease has also taken away volume and enunciation, but those who invest the time and effort are rewarded abundantly."

Julianna is currently stable, but doctors worry something as small as the common cold can quickly escalate into pneumonia, which has the potential to kill the young girl. Fox News reported that around one in every 2,500 people in the United States are affected by Charcot-Marie-Tooth disease.

In May, Moon shared her daughter's story on The Mighty and gave more details concerning the "remarkable, uncomfortable, humbling conversations about heaven" she had with Julianna.
Moon reported Julianna's most hated part of being hospitalized was the use of naso-tracheal suction, or NT, which is administered every four hours. 

CNN clarified that NT is when a nurse places a tube down Julianna's nose and throat. The procedure requires the nurse to push past Julianna's gag reflex and insert the tube into her lungs to suck mucus from tiny pockets in her airways.

Prior to their conversation with Julianna, Moon and Snow had planned to take her to the hospital the next time something happened, but Moon told CNN, "She made it clear that she doesn't want to go through the hospital again. So we had to let go of that plan because it was selfish."

Many critics claim Moon and Snow were "unbelievable," and that Moon's questions were "leading." Moon returned to The Mighty and said the comments hurt but that 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."

Art Caplan, a bioethicist, claims children are usually unable to fully comprehend death until they are around nine or ten-years-old. He told CNN, "This doesn't sit well with me. It makes me nervous."

Dr. Chris Feudtner, a pediatrician and ethicist at Children's Hospital of Philadelphia, said Julianna's experience is "irrelevant and doesn't make any sense. She knows more than anyone what it's like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna."

He added, "Palliative care isn't about giving up. It's about choosing how you want to live before you die. This little girl has chosen how she wants to live."

In a post on The Mighty, Moon recalled a conversation she had with Julianna about their reunion in Heaven.

"Do you want me to stand in front of the house, and in front of all the people so you can see me first?" Julianna asked.

"Yes. I'll be so happy to see you," Moon replied.

"Will you run to me?" 

"Yes," Moon said, "And I think you will run to me too." 

"I'll run fast," Julianna said, shaking her head back and forth.

"Yes, I think you will run so fast."

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