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Terminally ill Julianna Snow, 5, wants to go to 'heaven, not
Mon Nov 2, 2015 06:27
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Terminally ill Julianna Snow, 5, wants to go to 'heaven, not hospital'

Date
October 30, 2015

Kim Arlington
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Little girl chooses heaven over hospital

Five-year-old Julianna Snow suffers from a severe neuromuscular disease, she tells her parents not to worry when she goes to heaven.

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Like many five-year-olds, Julianna Snow loves dressing as a princess. But each day when she wears her favourite Disney outfit, she also has to wear a mask so she can breathe.

Julianna suffers from an incurable neurodegenerative disease and has grown so weak that even a cold could kill her.

Her parents sparked an international debate by letting her decide whether she wants further treatment next time she falls ill.


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Photo: juliannayuri.com


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Julianna, who lives with her parents and brother in the US state of Oregon, has Charcot-Marie-Tooth disease, an inherited neurological disorder, which affects as many as one in 2500 Australians.

Treatment can manage symptoms but Julianna's medical specialists agree that if she contracts another infection, she is unlikely to survive.

She can no longer eat, or move without help, and last year spent 63 days in intensive care with respiratory failure.

Her mother, neurologist Michelle Moon, revealed on her blog that a heart-wrenching conversation with her daughter made her reconsider the plan to take Julianna to hospital if she fell ill again.

M: Julianna, if you get sick again, do you want to go to the hospital again or stay home?
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Julianna Snow celebrating her birthday Photo: juliannayuri.com

J: Not the hospital.

M: Even if that means that you will go to heaven if you stay home?

J: Yes.
Five year old Julianna Snow has a neurodegenerative disease.

M: And you know that mommy and daddy won't come with you right away? You'll go by yourself first.

J: Don't worry. God will take care of me.

M: 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.
Five year old Julianna Snow and her mother, Michelle Moon, from Portland, Oregon.

J: I understand.

M: (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.

J: That's OK. God will take care of me. He's in my heart.

The family's decision to respect Julianna's end-of-life choice has attracted both criticism and support, and divided the medical ethics community in the US. But Australian bioethicists said the decision was reasonable in the circumstances.

"The controversy among the bioethicists focuses on whether a five-year-old girl is able to make a life or death decision of this sort," said Professor Paul Komesaroff, director of the Centre for Ethics in Medicine and Society at Monash University.

"You wouldn't normally ask a child to make crucial decisions because they lack the ability to understand completely the circumstances or the complexity of the situation. But ... I don't feel that this is a case of the parents abdicating their responsibility to make decisions. I see it as a genuine act of concern and love, in which they've introduced the aspect of respect for the little child herself."

Professor Komesaroff said Dr Moon was "gently talking to her daughter, trying to explain to her what she thinks is the right thing to do, and the little girl - with the arresting wisdom that children sometimes have - agrees with her mother. [She] recognises it's appropriate for them not to go on with the invasive, painful, distressing medical treatment that she's been subjected to for such a long time."

Bridget Haire, a bioethicist at the University of NSW, said if there was medical consensus that a child's illness would ultimately be fatal, it was reasonable to focus on quality of life.

"And that would include asking the child her wishes and whether [she] wants to hang on and have the greatest length of life possible, or whether she would prefer to have a quality of life," Dr Haire said.

"A person, however young, is going to have some idea of what is or isn't acceptable to them."

Dr Haire said the choice to refuse further treatment in this case was not solely Julianna's.

"Really what she's given is a kind of assent ... she has agreed to this idea that she would rather be at home and safe and comfortable, rather than having interventions to try to live as long as possible."

Five year old Julianna Snow and her mother, Michelle Moon, from Portland, Oregon. Photo: juliannayuri.com
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