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Terminally ill child dies on her own terms

(CNN) – Eighteen months ago, a terminally ill five-year-old told her parents she wanted to go to heaven over the hospital the next time she got sick.

Julianna Snow died last week on her own terms.

Her mom, dad and brother arranged a celebration more than a funeral with all of her favorite things. Mourners decorated cupcakes and painted their nails, and children played with her toys.

“She would say ‘why not?’,” said Juliana’s mom Michelle Moon. “She loved bright, fabulous, more-is-more fun.”

Every day, Julianna wore one of those princess dresses, and the day we visited her in October 2015, her nails were painted in pink and white polka dots.

Julianna was dying from an incurable neuromuscular disease and she had a very specific request for her parents.

Her mother blogged about it and wrote out this exchange with her daughter:

“Julianna, if you get sick again, do you want to go to the hospital or stay home?”

“Not the hospital.”

“Even if that means you will go to heaven if you stay home?”


“And you know that Mommy and Daddy won’t come with you right away, you’ll go by yourself first.”

“Don’t worry, God will take care of me.”

Julianna told her parents she hated the hospital, especially a procedure called nasal tracheal suctioning.

“They basically stick a tube on a suction machine and you stick it up the nose, down past the tongue, back into the throat as deep as you can go and you start suctioning,” said Julianna’s dad Steve Snow. “If given the choice of me or one of the other respiratory techs, she would usually ask for me to do it.”

“Would it save her life to do it again if she were to get an infection?” “I don’t think so,” Snow tearfully answered.

A year and a half after Julianna made her wishes clear, she died, not in a hospital room, but in her pink princess bedroom.

“She went after 18 beautiful months,” Moon said. “She didn’t go after a year of horrible hospitalizations. Things got a lot easier for us when we started following her lead and listening to what was important to her.

“She died, I think, exactly where she wanted to die,” Moon said.

Her family says Julianna arrived in heaven on her terms.

At the memorial, Snow said “Julianna’s disease was like a prison for her body, but not her spirit. But now that prison has broken open and Julianna can soar, on angels’ wings.”