5-Year-Old Gets Her 'Heaven or Hospital' Wish, Dies at Home

Girl with terminal illness wanted to spend final days at home, not in a medical facility
By Jenn Gidman,  Newser Staff
Posted Jun 15, 2016 8:07 AM CDT

It started with a conversation last year that Michelle Moon had with her terminally ill daughter, Julianna, about where she'd want to be if she got sick again: in the hospital or at home. Julianna picked home, even if it meant she'd die there, and that's where the 5-year-old peacefully passed away Tuesday, CNN reports. "Our sweet Julianna went to heaven today," Moon wrote on her blog. "I am stunned and heartbroken, but also thankful. … We got almost six years together." In her post, Moon also documented the fight Julianna had waged against her incurable Charcot-Marie-Toot disease and the "startling" words she'd speak that seemed to suggest a more mature understanding of terminal illness than most would expect. Still, Moon, a neurologist, and her husband, Steve Snow, an Air Force pilot, were thrown by the backlash after a CNN story on their family in October.

"They are Steve's and my decisions, but we look to Julianna to guide us," Moon rebutted to People in January. And medical experts who worked with the family supported their decision: One hospice nurse said, "I don't know that it's appropriate for every child, but in this scenario it's very appropriate." What hurt the most, Moon says, were judgmental attacks—including the Dear Julianna website, which shows people with neuromuscular disabilities who survived to adulthood—based on a misperception she and her husband had deprived Julianna of medical care. CNN explains doctors had told Julianna's parents if she chose the hospital, there was a "reasonable chance" she'd die anyway and that she'd spend her last days mostly sedated and undergoing painful medical procedures. Instead, Julianna's final bout was quick, Moon told CNN, and "she died at home … in my arms." (This baby who died shortly after birth finished his bucket list before he was born.)

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