Terminally ill girl, 5, dies at home surrounded by family after choosing 'to go to heaven over hospital'

Now in heaven: Julianna Snow, 5, told her parents the next time she were to get seriously ill, she would rather go to heaven than to the hospital. She died at her family home in Washougal, Washington, on Tuesday

A five-year-old girl with an incurable neuro-degenerative disease died 'comfortably' at her Washington home on Tuesday, her parents have said.

Julianna Snow, who told her parents she would rather go to heaven than back to the hospital, suffered from a severe form of the rare condition Charcot-Marie-Tooth Disease and could not walk, eat or even breathe on her own.

Her mother, Michelle Moon, 43, a neurologist, announced on her blog this week that her daughter 'is free now' after dying in the at-home hospice the family had built for Julianna.

Moon wrote: 'Our sweet Julianna went to heaven today. I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together.  

Parents Michelle Moon and Steve Snow (pictured with Julianna, left, and her brother Alex, right) agreed to honor their daughter's wishes not to hospitalize her next time she was to fall ill

Moon continued in her post: 'I wanted more time, of course, and that’s where the sadness comes in. But she is free now. I will have more to say later. For now, this is what is in my heart.'

Last fall, Moon asked her daughter whether she would want to go back to hospital for treatment if she were to get sick again, after years of extended stays and visits.

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

Moon wrote an essay about Julianna's response and posted it on her blog, quickly sending the story viral.  

In memoriam: Michelle Moon posted a message to her blog on Wednesday confirming her daughter's death

The mother explained in the piece how she said to 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 Snow suffered from a severe form of the rare condition Charcot-Marie-Tooth Disease and could not walk, eat or even breathe on her own

 The family live in Washougal, Washington. Moon and her husband, Steve Snow, told their daughter that heaven is where she will get to do the everyday activities she never could, like play, jump, run and eat real food.

They told her she would get to meet her great-grandmother who, like Julianna, had a love for sparkly clothes.

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

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.

Doctors had warned that the next time Julianna gets ill from something as minor as a common cold, she risked dying of pneumonia.

In May last year, 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.

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 also 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.