Generally, decision-making is best left to the adults—especially the tough choices. But in some cases, you have to bend the rules a little. This is one of those times, when a family was confronted by a choice that absolutely had to be made, while looking through the tears. It included life, death, terrible pain and discomfort…and a beautiful little girl, named Julianna Yuri Snow. The article was wonderfully written by Travis M. Andrews, for the Washington Post.
Julianna had an awful disease, which worsened progressively, and her agony increased along with her illness. There was no viable solution, but for a five-year old, her quality of life would only get worse. She would not enjoy a normal childhood. Her parents, Michelle Moon, a neurologist, and Steve Snow, surely suffered along with her—emotionally—but there was little that they could do for for Julianna.
There are many mutations of the disease, Charcot-Marie-Tooth Disease; however, in Julianna’s case, it was one of the worst. She was gradually losing each of her bodily functions. Eventually, her physician, Dr. Sarah Green met with Michelle and Steve, and advised them that, the next time Julianna got sick, she would probably die. The question that Dr. Green posed was for them to decide whether to bring Julianna back to the hospital, knowing how much she hated the treatment, or just allow her to die at home—and in peace?
The linked story from “WaPo” is as follows: https://www.washingtonpost.com/news/morning-mix/wp/2016/06/15/i-dont-like-dying-5-year-old-who-chose-to-forgo-treatment-sparking-debate-has-died/?postshare=8021466006109700&tid=ss_mail. After you read the WaPo story, be sure to click onto Michelle’s blog, which is dedicated to Julianna.
Can you imagine discussing where to die with a four year-old (at the time)? Julianna responded that she did not wish to return to the hospital, and that “heaven is good”. Besides this story, from the Post, there are three blog posts, listed below, as well. The blog links are as follows:
“The Mighty” (heaven over hospital): http://themighty.com/2015/05/my-daughter-wants-to-choose-heaven-over-the-hospital/.
“The Mighty” (daughter with disease faces dying): http://themighty.com/2015/06/daughter-with-charcot-marie-tooth-disease-embraces-dying/.
As usual, there have been comments made by various people, stating pro and con opinions, about whether or not Julianna should have been consulted. They came from: parents, lawyers, and medical ethicists and with opposing viewpoints. But, in the long-run, the opinions that really mattered were: the doctor; the nurses caring for Julianna; Michelle and Steve and, of course Julianna? Michelle and Steve seem happy that they, along with Julianna, made the right decision!
NOTE: On the Julianna Yuri (Snow) blog post, be sure to “Raise a Cup.”