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5-Year-old with terminal illness makes controversial end-of-life decision

Two Oregon parents are making headlines for being forced to make a decision no parent should ever have to make: Should they continue their terminally ill daughter’s treatment, or should they let their daughter die at home the next time she is sick enough to go to the hospital?

Five-year-old Julianna Snowhas lived for most of her life with an incurable neurodegenerative disease. Now her parents, Michelle Moon and Steve Snow, are allowing their daughter to have a say in making this grown-up decision. Julianna suffers from Charcot-Marie-Tooth disease, a form of spinal muscular atrophy that often kills children before the age of 2.

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Moon and Snow asked Julianna when she was 4 years old for her input on her quality of care: Did she want to go to the hospital the next time she became very sick, or would she rather stay home and go to heaven?

On Moon’s personal blog, she posted an excerpt of the heartbreaking conversation with her young daughter:

“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.”

In the face of making such an impossible choice, these parents appear to have done everything right. They have spent years consulting with doctors. Moon says she extensively researched end-of-life decisions online. Moon had a painfully honest conversation with her ill daughter, where she explained Julianna’s options and asked if she understood the consequences of her decision.

And yet, the world still doesn’t understand.

After the news of Julianna’s decision exploded on Facebook, the emotional response from perfect strangers was overwhelming. Julianna’s parents have been called “absolutely disgusting” for putting this choice in the hands of a young girl who may not fully grasp the concept of heaven yet. Some commenters went so far as to say, “The parents should be arrested and thrown in prison… and they are certainly not fit to be making any decisions whatsoever in relation to the wellbeing of children.”

But parents on the other side, especially parents of sick kids, seem to know where Moon and Snow are coming from. As unbelievable as it seems to allow a 5-year-old to refuse further treatment — treatment that may only cause pain and suffering and extend a poor quality of life — supporters believe Julianna’s dying wish should be honored. As one commenter explained, “If it was my kid, I would do the same thing — God forbid I would possibly even go so far to not let my child suffer an excruciating death.”

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None of us knows how we would react in these parents’ shoes. But what we do know is that Julianna’s parents are brave. All we are seeing are a few news snippets telling us that two parents have chosen to let their terminal daughter decide how to end her life. What we don’t see are the years leading up to this moment, years of painful and often ineffective treatment where two parents were forced to watch their daughter suffer.

End-of-life care is never going to stop being a hotly debated topic that makes people foam at the mouth. But maybe the reason we’re arguing so much about one family’s decision is because it’s easier than the alternative — facing the uncomfortable truth this story brings to light. We don’t get to “keep” our kids. They are only ours for a time. And no one can fault Julianna’s parents for trying to make their short time together more meaningful.

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