Parents Allow Sick Girl Choice Between Hospital Or Heaven

Julianna Yuri Snow has an incurable neurodegenerative illness called Charcot-Marie-Tooth disease. Julianna’s case is especially severe and has gotten progressively worse. Her muscles are so weak that she cannot walk, chew or even sit up. But CMT does not affect the mind, Julianna is still bright and wise beyond her five years. Julianna herself said at age four, “I can’t walk, but I can talk.”

Charcot-Marie-Tooth disease causes respiratory failure and as a result, Julianna continuously suffers from pneumonia. Because of this Julianna has spent a lot of her life in a hospital. It has been over a year since she has suffered from an infection, yet Julianna says if, or when, it happens, she does not want to return to the hospital to treat it.

The five-year-old has decided she would like to forego going to the hospital to receive her most-hated and painful treatment, naso-tracheal suctions, and instead would rather just go to heaven. Her religious parents have taught Julianna that God loves her and will take care of her in heaven. They fully support her decision not to undergo treatment should she get another infection because they believe she is wise enough to make this choice.

Spa day #CMT #charcotmarietooth #spa #snoopy

A post shared by Michelle Moon (@julianna.yuri) on Oct 4, 2015 at 7:54pm PDT

Understandably, this outlook has caused much debate. Bioethicist Art Caplan expressed to CNN his fear of allowing a child to make such a decision.

“This doesn’t sit well with me. It makes me nervous,” said Caplan. “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 nine or 10.”

But Julianna’s own pulmonolgist, Dr. Danny Hsia, sides with Julianna’s parents. He believes that she, in particular, is mature and wise enough to make this choice.

“In that case, it makes a lot of sense to listen to her. I have the utmost faith in her mother and father. They’re phenomenal parents and have her best wishes at heart,” he said.

Julianna’s nurses concur, and think she should die at home with her loved ones in her bed.

For now, Julianna’s family will enjoy the time they have left, however long it may be.

And when it comes down to it, that’s all any one of us can say.

Do you think a five-year-old is capable of such a serious decision? Sound off in the comments below.

This is what palliative care looks like: J and her angel (aka hospice volunteer) #palliativecare #grateful #conversationproject #hospice @j.clairmont.donovan

A post shared by Michelle Moon (@julianna.yuri) on Sep 5, 2015 at 10:55am PDT