Julianna Snow and her family
, a terminally ill five-year-old girl who captured the worldwide attention with the CNN program Heaven Over Hospital
, has died in her family home in Portland, Oregon.
Snow suffered from a common inherited neurodegenerative condition called Charcot-Marie-Tooth Disease – a condition that damages the nerves affecting certain muscles. In most cases, the effects of the disease are confined to the arm and leg muscles, but in Julianna’s case it affected muscles needed for chewing, swallowing and even breathing.
After undergoing painful medical, Julianna expressed to her parents a desire to forgo treatment even if it meant her death. “She made it clear that she doesn’t want to go through the hospital again,” her mother Michelle explained in a CNN documentary. “So we had to let go of that plan because it was selfish.”
Snow’s case received attention from bioethicists who questioned the girl’s capacity to make end-of-life decisions.
New York University bioethics professor Arthur Caplan told
CNN, “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.”
“To say her experience is irrelevant doesn’t make any sense,” Chris Feudtner, director of the Department of Medical Ethics at the Children’s Hospital of Philadelphia said in response. “She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna.”
Snow’s parents clarified in a later interview that they were not allowing her to be the sole decision-maker, but rather that they thought it fitting to give her wishes significance in their own decision-making:
“I want to make it clear these are not Julianna’s decisions or choices,” Moon told
People. “They are Steve’s and my decisions, but we look to Julianna to guide us.”
Writing in a blog post
on Tuesday, Snow’s parents said that Julianna had died peacefully in their family home:
“She fought hard to be here, harder than I’ve seen anyone fight, with a body that was too frail for this world …. Today, she is free. Our sweet Julianna is finally free.”