A five-year-old girl who made the decision to stop hospital treatment of her terminal illness has passed away.
Little Julianna Snow suffered from an incredibly rare case of Charcot-Marie-Tooth Disease (CMT), a neurological disorder. The disease made her muscles so weak that she couldn’t swallow and even a cold could kill her.
On Tuesday of this week, her mother, Michelle Moon, wrote that her daughter “went to heaven today.”
“I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together. I wanted more time, of course, and that’s where the sadness comes in. But she is free now.”
“She was an unabashed princess and elevated everyone around her,” she continued.
“We were all kings, queens, princes and princesses by association.”
Michelle described her daughter’s mind as “always going” and that it took the family to a “beautiful world without limits.”
Back in October, Julianna’s parents made headlines around the world when, at Julianna’s request, they decided not to admit her to hospital if she suffered another infection.
Her mother – who is a neurologist – and father, said the decision was ultimately theirs but they took little Julianna’s request into consideration.
Michelle also shared one of the conversations that led to their family’s decision:
Me: Julianna, if you get sick again, do you want to go to the hospital again or stay home?
J: not the hospital
M: Even if that means that you will go to heaven if you stay home?
J: Yes
M: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.
J: Don’t worry. God will take care of me.
M: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.
J: I understand.
M: (crying) – I’m sorry, Julianna. I know you don’t like it when I cry. It’s just that I will miss you so much.
J: That’s OK. God will take care of me. He’s in my heart.
When a New York University bioethicist, Art Caplan, told CNN, “There’s zero chance a 4-year-old can understand the concept of death,” Michelle was forced to respond.
“I realize [sic] that the idea of not doing ‘everything’ to prolong the life of a young child is perhaps unacceptable to some,” she said.
“But when your child’s illness is terminal, when the disease takes more and more and the treatments become riskier and offer less return, there are choices.”
“The choices seem impossible, and they’re painful. We believe that sometimes it’s an act of love not to do ‘everything’ to extend life and focus instead on giving your child the most beautiful life possible for as long as you’re allowed.”
