5-Year-Old Girl With Incurable Disease Makes Decision to 'Go to Heaven' Rather Than Face More Treatments

Heavenly skyMichelle Moon and Steve Snow's daughter, Julianna, is so young, and yet she has suffered from unthinkable pain. The little girl is believed to have Charcot-Marie-Tooth disease (it's incurable in Julianna's case), and Michelle and Steve allowed their 5-year-old daughter to choose death instead of more painful treatments.


This. Is. Tough.

Looking from the outside, it's understandable why someone would question why parents would allow such a young child to "choose" death over medical intervention. Yes, she's 5, but Julianna has been dealing with an unthinkably painful situation for her entire life. Whether or not you agree with their decision, it's important to try to put all the cards on the table, as it wasn't easy for anyone involved.

The fact is this: Julianna is dying, and her condition is only getting worse and becoming more painful. From how it sounds, Julianna was the one who told her parents she didn't want to go back to the hospital. It's not like they pushed ideals of Heaven onto her. Julianna asked to stop, and her mother had an honest conversation with her little girl about what that meant.

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Julianna's mom, Michelle Moon, is a neurologist and former air force captain who first noticed her daughter wasn't reaching any developmental milestones when she was months old, which caused concern. Listening to her "inner mommy voice," Michelle did the research and discovered her precious daughter was showing signs of spinal muscular atrophy, a genetic disease that causes severe issues with muscle movement -- including great difficulties swallowing and breathing. Sadly, many children who suffer from this disorder die before their second birthday.

Aside from being smacked with this possible nightmare of a reality, Michelle, like most moms, wanted to know how her daughter could've possibly inherited this disease. Thinking of her husband Steve's "funny-looking feet" (it's not a joke, and actually played a major role), she sought a specialist who was then able to officially diagnose him with Charcot-Marie-Tooth disease. That same CMT expert tested Julianna, but was unable to pinpoint the specific genetic mutation that caused her disorder.

To think what this poor girl has endured over the years is heartbreaking. With their daughter's health continuing to decline, these parents seemingly did everything they could to nurse their sweet girl back to health. Julianna's dad left the air force to become her full-time caregiver, and her family (Julianna has a 7-year-old brother named Alex) moved closer to the Doernbecher Children's Hospital in Oregon, so she could get the treatment she needed.

But what else can you do when your now 5-year-old child has a progressive disease that makes breathing harder by the day? Even the slightest cold could sadly be a fatal blow.

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I can't even imagine what it's like to be in Michelle's shoes -- or any parent who will lose a child to a disease. You want to remain hopeful and keep fighting, but if doctors say medical intervention will likely become less helpful (remember, Julianna's muscles are getting weaker), and will be more painful ... it puts me at a loss for words. With the possibility of Julianna's dying from a procedure in the hospital, or passing away at home, to say you're stuck between a rock and a hard place is quite an understatement.

Michelle and Steve continued to take Julianna to the hospital -- even if it meant enduring multiple, and extremely painful, suctioning procedures to suck the mucus from her lungs (Julianna was so weak, she couldn't scream), which occurred almost every two hours.

At some point, however, you have to stop and pay attention to your child -- which is exactly what they did.

If I, myself, am a physician, and hear doctors tell me the inevitable will eventually happen -- but not before more pain for my little girl -- it's only natural for me to ask when enough is enough (Michelle's blog discusses her daughter's progress, and her toughest decision as a parent).

This has got to be such a hard decision for this family. I truly hope the days Julianna has left are full of peace. My thoughts and prayers are with this family, and anyone else who's faced with a situation like this.




Image via ZaZa Studio/shutterstock

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