5-year-old with incurable disease choosing heaven over hospital

PORTLAND, Ore. -- Julianna Snow has spent much of her short life suffering from an incurable disease. Now, her parents have made the unimaginably heartbreaking decision to honor their 5-year-old daughter's dying wish -- staying home rather than going to the hospital the next time she gets sick, even though it means "going to heaven without mommy and daddy."

On her blog, Julianna's mom Michelle Moon says that her daughter is "smart, opinionated and kind." On the family's blog, Moon wrote "She thinks everything looks better embellished and is happy almost all of the time. She dislikes conflict and messy hair."

As a toddler, Julianna was diagnosed with Charcot-Marie-Tooth disease, a disorder that breaks down the nerves and causes complications breathing and swallowing. The disease is ultimately terminal and Julianna has already spent much of her life visiting doctors and in the hospital undergoing painful treatments. So, after spending 66 days of a year in hospitals, including three trips to the pediatric ICU, her parents asked her if she wanted to go back to the hospital the next time she gets sick or stay at home.

Julianna chose heaven.

Michelle wrote on her blog Saturday that it has been almost a year since the family decided they would no longer spend time in the hospital to prolong Julianna's life. Michelle recounted an exchange with Julianna:

J: I will love you forever.
M: I will love you forever.
J: I will always be your baby.
M: And I will always be your mom.
J: Not when we die...
M: Yes, even when we die.
J: Mom, will you miss me when I die?
M: Oh, Julianna. I nod.
J: I don't want you to be sad. I want to give you flowers so that you remember me.
M: Julianna -- it could be a long time -- you've done so well. Do you worry about dying?
J: Nods. Sometimes. I'm used to things here. I'm not used to dying.
M: Of course not. No one is. We only die once. Sweetie, I don't want you to worry about it.

Michelle, a neurologist, noticed her daughter missing early milestones as a baby, also realized her husband, an Air Force pilot who retired to care for their daughter, showed symptoms of the same rare neuromuscular disorder. Steve Snow had gone undiagnosed his whole life, but it turned out he had a mild form of CMT, and had passed it to Julianna.

Julianna has a brother, Alex, who is 7 years old. CNN reports he is going through counseling to prepare for his little sister's death, and has asked if his mom's heart would stop when Julianna dies because she will be so sad.

"I have come a long way in accepting what I cannot change. The same God who made Julianna bright and lovely also allowed her to have a cruel disease," Michelle wrote on her blog.

Because her muscles and nerves are affected by the disease, Julianna cannot walk, but her brain is unaffected. Her mother likens it to a child having ALS (Lou Gehrig's disease). Julianna cannot even cough on her own to clear fluid from her lungs, so she has to use a machine to clear them out:

"[I]t always seems that the children who face the most serious illnesses are also the most special. If I had my choice, she would be more ordinary -- and we would be able to see her grow up," Michelle wrote in a letter to friends last year.

Michelle says Julianna made the decision after having to have a tube shoved through her nose down her throat every two hours or less at the hospital to clear her lungs. Julianna could not be sedated for the procedures.

On The Mighty, a website that aims to help people facing disease and disability, Michelle wrote about another conversation with Julianna. She says in the year since they asked Julianna if she would choose heaven or hospital, Julianna has not faltered in her choice.

J: Will you miss me?
M: Yes. I will miss you so much. I'll be really sad. But I'll come join you one day.
J: Will I die in heaven?
M: No, we only die once. We get to live in heaven forever.
J: Good. I won't die in heaven. When you die, will I come to get you?
M: I don't really know how it works, Julianna. But I think you will be the first person I see when I get to heaven. And I'll be so happy.

CNN contributed to this report.
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