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'I'd rather go to heaven than hospital again': Girl, 5, with incurable neurodegenerative disease tells her parents what to do when she gets really sick again
When Julianna Snow was four years old, her mother Michelle Moon asked her if she wanted to go to hospital or die at home if she got sick again
Moon said her daughter's answers were 'fast and clear' as she chose heaven over the hospital
Julianna, now five, has a severe case of Charcot-Marie-Tooth disease
Her mom says it has been a year since Julianna last had an infection, but she knows that it will not last forever as her daughter prepares for heaven

By Myriah Towner For Dailymail.com

A five-year-old girl with an incurable neurodegenerative disease told her parents that the next time she gets seriously ill, she would rather go to heaven than to the hospital.

When Julianna Snow was four years old, her mother Michelle Moon asked her if she were to get very sick again, did she want to go back to the hospital for more treatments or did she want to die at home, CNN reported.

Moon said her daughter's answers were 'fast and clear' as she chose heaven over the hospital, the mother recounted in a blog post in July of her first conversation about heaven with Julianna

Michelle Moon asked her daughter, 'Julianna, if you get sick again, do you want to go to the hospital again or stay home?'

'Not the hospital,' Julianna replied.

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

Julianna: 'Yes.'

Moon: '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.'

Moon: '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.'

Moon: (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 who lives in Oregon has not ever been healthy enough to go to Sunday school at City Bible Church in Portland, where her family attends church, so the majority of what she knows about heaven she knows from her parents, CNN reported.

Her parents, Moon and Steve Snow, tell her that heaven is where she will get to do everyday activities like play, jump, run and eat real food, all things she can not do now.

In heaven, they tell her she will get to meet her great-grandmother, who like Julianna, had a love for sparkly mismatched clothes.

They also told her that God will be in heaven too, and that he will love her even more than they do, according to CNN.

However, they told Julianna, who started showing signs of the neuromuscular disease when she was one, that they will not be in heaven when she arrives, nor will her big brother, Alex.
They told her she will have to go to heaven before them because she has a severe case of Charcot-Marie-Tooth disease.

The illness, which initially debilitated her arms and legs, is now targeting the nerves that control her breathing and muscles.

According to Fox News, the disease affects around one in 2,500 people in the United States.

While she is currently stable, doctors have said that it is possible that the next time Julianna gets ill from something even as minor as the common cold, she risks dying from pneumonia.

Earlier this year, in May, Moon shared her family's story on The Mighty along with one of the 'remarkable, uncomfortable, humbling conversations about heaven' she had with Julianna.

In that conversation, Julianna again said that she did not want to go back to hospital if she were to get sick again, expressing she hated the most dreaded part about the hospital, naso-tracheal suction or NT.
During NT, which was usually done every four hours, a nurse would place a tube down Julianna's nose and throat, pushing it past her gag reflex and into her lungs, in order to suck the mucus out of the tiny pockets in her airways, CNN reported.



Prior to these conversations, Julianna's parents had planned to take their daughter back to the hospital if she were to get another infection, however after hearing Julianna's wishes they said they changed their minds.

'She made it clear that she doesn't want to go through the hospital again,' Michelle told CNN.

'So we had to let go of that plan because it was selfish.'

After her post in May, Moon was hit with both support and criticism, as some naysayers said it was 'unbelievable' that a parent could think a four-year-old was capable of making a decision on life, and thought her questions were 'leading'.

Moon posted a second post on The Mighty in June and said the comments by the few critics hurt, but said wrote that Julianna 'hasn’t changed her mind about going back to the hospital, and she knows that this means she’ll go to heaven by herself. If she gets sick, we’ll ask her again, and we’ll honor her wishes.'

Bioethicist Art Caplan said that he thinks Moon made the wrong decision, and said that children usually do not understand the concept of death until around age nine or ten.

'This doesn't sit well with me. It makes me nervous,' he told CNN

However, Dr. Chris Feudtner, a pediatrician and ethicist at Children's Hospital of Philadelphia said that to say Julianna's experience is 'irrelevant doesn't make any sense.'

'She knows more than anyone what it's like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna,' he told CNN.

He added, 'Palliative care isn't about giving up. It's about choosing how you want to live before you die. This little girl has chosen how she wants to live.'

Moon said the last few months have been 'a dream' as it has been a year since Julianna last had an infection, however she knows that it will not last forever as her daughter prepares for heaven.

In a post on The Mighty in June, Moon recounted a conversation with Julianna about when they will see each other in heaven.

'Do you want me to stand in front of the house, and in front of all the people so you can see me first,' Julianna asked her mom.

'Yes. I’ll be so happy to see you,' Moon replied.

'Will you run to me,' Julianna asked.

'Yes. And I think you will run to me too,' Moon responded.

'I’ll run fast,' Julianna said as she shook her head back and forth to show her mom how fast she will run.

'Yes, I think you will run so fast,' her mother said


Read more: http://www.dailymail.co.uk/news/article-3292571/Girl-5-incurable-disease-tells-parents-d-heaven-hospital.html#ixzz3pxAlymyP
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