Julianna Snow’s story sparked controversial conversations throughout the country this past week. The five-year-old is suffering from Charcot-Marie-Tooth Disease (CMT), one of the most common inherited neurological disorders. CMT causes damage to the peripheral nerves and results in muscle weakness and atrophy, some loss of sensation, stiffened joints, and curvature of the spine. As a result of the disease, Julianna’s coughing and breathing muscles are so weak that the next cold she catches could kill her.

Julianna’s parents, well aware of the implications of her disease, decided to give her the choice of going to the hospital the next time infection settles or staying home to go to heaven. Here is the defining conversation her mother recounted having with Juliana:

Mother: You don’t want to go the hospital, right, J?

Julianna: I don’t like NT (naso-tracheal suction, one of her treatments).

Mother: So if you get sick again, you want to stay home?

Julianna: I hate NT. I hate the hospital.

Mother: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right? And it probably means that you will go to heaven by yourself, and Mommy will join you later.

Julanna: But I won’t be alone.

Many opinions have been voiced in regards to this story. Some support the family’s decision to give Julianna the choice; others are horrified and do not believe a child as young as five is able to understand or make a decision on life. Some pointed out that Julianna's mother seems to be asking her leading questions in the conversation above. Should young children suffering from chronic illnesses be given such an impactful choice? Are children even capable of understanding death? What if hospital treatment could potentially save the child?

Unfortunately, the answers to most of these questions are unknown, and all we can do is hope that all children is situations similar to Julianna's live happy, comfortable lives, however much time that may be.