Parents Offer 5-Year-Old Terminally Ill Daughter The Choice To End Life At Home Instead Of Continuing Life-Prolonging Treatments

Rather than pursue a tedious, but life-prolonging treatment at the hospital, the parents of a terminally ill 5-year-old girl are honoring their child’s decision regarding her end-of-life care. This means that their daughter will be allowed to die at home rather than head to the hospital for life-prolonging but hard-to-bear medical treatments.

CNN reports;

“She made it clear that she doesn’t want to go through the hospital again,” mom Michelle Moon, of Portland, Ore., told CNN. “So we had to let go of that plan because it was selfish.”

Her daughter, Julianna Snow (pictured above), was diagnosed with a severe case of the incurable neurodegenerative Charcot-Marie-Tooth disease before she was 2. Though currently stable, she could die from something as simple as a cold, as her coughing and breathing muscles are too weak to fend off pneumonia. Last time she had an infection and was hospitalized, Julianna had to undergo painful nasotracheal suctioning several times a day. And next time, doctors believe, the only way to possibly save her would be to subject her to a state of very low quality of life: on a respirator, sedated.

Her parents asked her what she wants to do when faced with that, and she told them she wants to die at home — or go to “heaven” — instead. That decision came out of a stunningly frank conversation between Julianna, then 4, and her mom, as recounted in Moon’s blog back in July and delved into this week through CNN’s two-part feature story on the family:

“Me: Julianna, if you get sick again, do you want to go to the hospital again or stay home?

J: Not the hospital

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

J: Yes

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.

J: I understand.”

Moon, who did not respond to a request for comment from Yahoo Parenting, has blogged at length about the harsh reality for her family, which also includes husband Steve Snow and their 7-year-old son, Alex. “Her physical body is profoundly weak, but, verbally, she is like an elite gymnast,” Moon wrote about Julianna. “Her words are rich and precise. She uses them to entertain, engage and to show her love. Above all, she wants to be understood.”

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