October 27, 2015 | CNN
by Elizabeth Cohen
Five-year-old Julianna Snow has never been healthy enough to attend Sunday school at the City Bible Church in Portland, Oregon, where her family belongs, so most of what she knows about heaven, she knows from her parents.
They tell her that heaven is where she’ll be able to run and play and eat, none of which she can do now. Heaven is where she’ll meet her great-grandmother, who shared Julianna’s love of shiny, sparkly, mismatched clothes.
God will be in heaven, too, they tell her, and he will love her even more than they do.
But Michelle Moon and Steve Snow explain that they won’t be in heaven when Julianna arrives there, and neither will her big brother, Alex. She’ll go to heaven before them because she has a severe case of an incurable neurodegenerative illness called Charcot-Marie-Tooth disease.
Her coughing and breathing muscles are so weak that the next time she catches even a cold, the infection could settle in her lungs, where it could cause a deadly pneumonia. Her doctors believe that if they can save her under those circumstances — and that’s a big if — she will likely end up sedated on a respirator with very little quality of life.
There’s no debate about the medical facts of Julianna’s condition. But there is debate about something her parents have chosen to do: They asked their daughter, at the age of 4, if she would want to go to the hospital the next time she becomes dangerously ill, or would she want to stay home, where she would die. Julianna has said she doesn’t want to go to the hospital. She wants to go to “heaven.”