Five-year-old Julianna Snow is dying of an incurable illness called Charcot-Marie-Tooth disease, or CMT. Julianna's mother, Michelle, explains it by saying her daughter resembles someone with ALS (Lou Gehrig's disease). Julianna can't walk and is very weak, but her cognition is unaffected and she is still able to talk.
She's stable at the moment, but the muscles that control her breathing are so weak that any germ that comes her way, even just the common cold virus, could kill her. If she survives, doctors say she will likely end up on a respirator with very little quality of life.
Michelle has been writing about life with her daughter in a blog, and one post in particular has garnered a lot of attention. Michelle wrote about a conversation she had with her daughter, in which she asked Julianna if she wanted to go to the hospital the next time she becomes dangerously ill, or if she wanted to stay home and eventually go to heaven.
Here's a snippet of their conversation, from Michelle's blog post:
J: not the hospital
M: Even if that means that you will go to heaven if you stay home?
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.
Julianna is now five, but Michelle writes that they had this conversation when she was still just 4 years old.
You can read more about Julianna and Charcot-Marie-Tooth disease on Michelle's blog, www.juliannayuri.com.