Julianna Snow is only 5 years old, but she decided she would rather go to heaven than spend another day in the hospital.
She has a rare condition called Charcot-Marie-Tooth disease. The disease caused her muscles to atrophy and the quality of her breathing to seriously decline. If Julianna comes down with something as simple as the common cold, it could develop swiftly into fatal pneumonia.
If this happens, her doctors say in the unlikely event they can save her, she will spend the rest of her life sedated on a respirator.
Realizing the grim, unavoidable fate at hand, Julianna's mother, Michelle Moon, talked to her daughter about the concept of choosing to end her life when faced with another, perhaps permanent, trip to the hospital.
Moon detailed one of her discussions with Julianna on The Mighty, a site with stories about people and families dealing with deadly illnesses and disabilities.
Michelle and her husband, Steve Snow, originally knew they would take their 5-year-old to the hospital if she contracted an infection, but after speaking with Julianna, Michelle and Steve told CNN they “let go of that plan because it was selfish.”
When commentators on The Mighty expressed mixed feelings over Michelle and Steve allowing Julianna to choose for herself, Michelle wrote a follow-up post detailing their position.
Beyond commentators, bioethicists weighed in with varying replies to the Moon-Snow family's situation.
The first, Art Caplan, believes Julianna is too young to make such a decision that is, quite literally, life or death.
He told CNN,
Caplan added there is a chance Julianna could see the pain her parents felt watching her health deteriorate and is attempting to please them, as children often do.
Dr. Chris Feudtner, a former colleague of Caplan's, approached the issue from a much different perspective.
Doctors working closely with Julianna on a regular basis agree she made the right move.
Her pulmonologist, Dr. Danny Hsia, has faith Julianna, despite her age, knows what is best.
Since it has been a year since Julianna's last infection, her family is enjoying their time with her while they can.
All the while, her parents are preparing themselves and Julianna's 6-year-old brother, Alex, for the eventual reality of living without her.
Citations: Heaven over hospital: Parents honor dying child's request (CNN), My Daughter Wants to Choose Heaven Over the Hospital Read more: http://themighty.com/2015/05/my-daughter-wants-to-choose-heaven-over-the-hospital/#ixzz3pyDPSINB (The Mighty), How Our Daughter Helps Us Face Our Greatest Fear (The Mighty)