Julianna Snow: 5-year-old girl dies after being asked to choose between heaven or more painful hospital visits

Julianna Snow, a five-year-old girl with an incurable disease who chose to forego further treatment, died last week.

The girl's mother, Dr. Michelle Moon, announced her daughter's passing on a blog dedicated to Julianna.

Julianna was only two years old when she was diagnosed with a neurodegenerative illness called Charcot-Marie-Tooth disease. It's a progressive disease that rendered the little girl's hands and legs useless only two years later. Her swallowing and breathing muscles were also affected that Juliana had a tube in her stomach just to keep her fed. She was also in and out of the Doernbecher Children's Hospital in Portland, Oregon.

"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," Moon told CNN via text.

Julianna's story gained international attention because her parents, a neurologist and an air force pilot, asked the young girl what she wanted to happen. Asked whether she wanted to continue painful and intensifying hospital treatments on a more and more frequent basis, or instead go to heaven, Julianna chose the latter. Her parents say they took her words into consideration when they made their heartbreaking decision.

It was in October 2014 when Dr. Sarah Green prepared the parents to the reality that the next time Julianna got sick, she might never recover again or if she would, it would probably be brief and in poor state.

That's when they asked her.

Moon described the conversation on her blog, saying she repeatedly asked her daughter over a period of time if she wanted to go to the hospital again or stay home. Julianna hated the hospital as her treatments were intense and painful. At first it was described that she used to scream and cry as tubes were inserted, but by the end she would lay simply crying and whimpering at the painful procedures. Moon has said she tried her best to make sure her daughter understood what her decision meant, but believes her daughter clearly knew what more hospital visits would entail. After years of repeated painful treatments they believed Julianna knew better than anyone else what she was enduring and should have a say in what decision was ultimately made regarding her future.

"That's OK. God will take care of me. He's in my heart," she quoted Julianna as saying.

The decision to allow terminally ill children to have a say in their care when many argue they cannot comprehend what is fully happening has sparked an international debate.

"I realize that the idea of not doing "everything" to prolong the life of a young child is perhaps unacceptable to some," Moon wrote on the Mighty.

"We believe that sometimes it's an act of love not to do "everything" to extend life and focus instead on giving your child the most beautiful life possible for as long as you're allowed," she said.

The last 18 months of Julianna's life were spent in hospice, wearing princess dresses, doing crafts, painting her toenails, and planning a tea party with her kindergarten class which sadly never happened.