Air Force Veteran Steve Snow and Michelle Moon have not lived a normal life as parents since the birth of their daughter, Juliana. What was meant to be a joyous time for them as parents turned dismal when they learned their infant suffered from an incurable neurodegenerative disorder that has had her in and out of the hospital her whole life.

Juliana has a severe case of Charcot-Marie-Tooth (CMT) disease-a disorder that impacts the peripheral nerves, outside the brain and spinal cord, and supply the muscles and sensory organs in the limbs. CMT at first dedebilitated her arms and legs, but now it’s targeting the nerves that control her breathing muscles, according to Fox News and doctors predict that something as minor to most such as as the common cold could trigger a bout of pneumonia that could kill Juliana.

The disease itself and Juliana’s battle with the disorder has not been a focus of debate but her parents recent comments have sparked opinions as of late. Juliana’s mom and dad, Michelle and Steve asked their daughter last year, if she would want to go to the hospital the next time she becomes dangerously ill, or would she want to stay home, where she would die.

This past May, Juliana’s mother, Michelle Moon, shared her thoughts on The Mighty, a web platform for families coping with disease and disabilities. Moon started a blog to chronicle Juliana’s experience and cited this conversation with her then four year old daughter:

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

Juliana: not the hospital

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

Juliana: Yes

Moon: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.

Juliana: 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.

Juliana: 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.

Juliana: That’s OK. God will take care of me. He’s in my heart.

Juliana’s parents placing a decision such as this in her hands has sparked some recent criticism from blog readers and professionals alike:

“This doesn’t sit well with me. It makes me nervous. I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there’s zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn’t really develop until around age 9 or 10.”-bioethicist Art Caplan, New York University

Caplan’s former coworker Dr. Chris Feudtner, a pediatrician and ethicist at Children’s Hospital of Philadelphia, disagreed with Caplan:

“To say her (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.”

Thankfully, little Miss Juliana is maintaining with her at-home treatments and the family has not been faced with the Heaven or Hospital decision. This was the latest entry from Michelle Moon from her blog this past Saturday:

Prayer has given us this beautiful year. When I wrote this letter, I could not have imagined that I’d still be sitting here tonight, by Julianna’s bed, waiting for her to fall asleep.

Last night, I gave her one last hug as I tucked her in.

Juliana: I will love you forever.

Moon: I will love you forever.

Juliana: I will always be your baby.

Moon: And I will always be your mom.

Juliana: Not when we die…

Moon: Yes, even when we die.

Juliana: Mom, will you miss me when I die?

Moon: Oh, Julianna. I nod.

Juliana: I don’t want you to be sad. I want to give you flowers so that you remember me.

Moon: Julianna – it could be a long time – you’ve done so well. Do you worry about dying?

Juliana: Nods. Sometimes. I’m used to things here. I’m not used to dying.

Moon: Of course not. No one is. We only die once. Sweetie, I don’t want you to worry about it.

And we prayed. Prayed that she doesn’t ever get sick again, and that she won’t be afraid of anything. I thanked God for the joy that she brings and told Him how much we love her.

Nothing is guaranteed here. For most of us, our children are our greatest treasures here on this earth. We are over the moon when they smile at us for the first time. We watch them take their first steps, we cry like babies when we send them off to Kindergarten and subsequently when we watch them graduate high school, shove off to boot camp or college and say their wedding vows. We all take for granted that we will have these moments while some will have them stolen away, knowing they may never see them and are just living in the day to day, moment-to-moment and taking in every precious second God gives them. Our prayers go out to the Snow family.