An Oregon couple is allowing their 5-year-old daughter with fatal Charcot-Marie-Tooth disease (CMT) to decide if she wants to die at home or go to the hospital the next time she gets sick. Parents Michelle Moon and Steve Snow asked their daughter Julianna if she would prefer to die at home when she was 4 years old. Now 5, Julianna says she wants to choose “heaven over hospital” when she inevitably gets sick again.
CNN reports Julianna’s CMT is rapidly progressing; the next time she develops even a common cold, she would almost certainly die at home. If the child went to the hospital, there is a chance of survival, but she would have to be put on a respirator with very little quality of life.
Moon documented their conversation about heaven on her blog.
Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?
Julianna: Not the hospital.
Michelle: Even if that means that you will go to heaven if you stay home?
Michelle: And you know that mommy and daddy won't come with you right away? You'll go by yourself first.
Julianna: Don't worry. God will take care of me.
Michelle: 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.
Julianna: I understand.
Michelle: (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.
Julianna: That's OK. God will take care of me. He's in my heart.
While Moon and Snow say that they will ask Julianna again the next time she gets sick, they plan to honor her wishes.
Moon said, "She made it clear that she doesn't want to go through the hospital again. So we had to let go of that plan because it was selfish."
Photo courtesy: torange.us
Publication date: October 28, 2015