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| Julianna on her 5th birthday as a princess with tiara |
She has been featured on CNN's Heaven or Hospital series in 2015.
When she was 2, Julianna was diagnosed with Charcot-Marie-Tooth disease, a neurodegenerative illness.
By the time she was 4, 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. Her breathing muscles suffered too, and she was in and out of Doernbecher Children's Hospital in Portland, Oregon.
But she had an agile mind, that was why her parents consulted then, at the age of 4, when doctors at Doernbecher told them they would have to make some very difficult medical decisions.
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| The family- Julianna and brother being held by mum and dad. |
The doctors explained to Julianna's mum, a neurologist, and her father, an Air Force fighter pilot, that they should consider what they wanted to do the next time an infection made it difficult for their daughter to breathe.
Did they want to bring her back to the hospital? The doctors said there was a reasonable chance Julianna would die there after being subjected to painful procedures.
Even if she lived, they said, it would probably be for a short time, and she'd probably be sedated, unable to think and talk.
There was no right answer, the doctors told them.
Early last year, Moon asked Julianna what she wanted to do and 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 sick very suddenly and it was back to the same battle of helping her breathe," she wrote. "This time, she didn't bounce back -- she got worse and worse and worse and was gone in just over 24 [hours].
"We had the full support of hospice and we had the things we needed to keep her comfortable. 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."
Image Credit: CNN
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