Since birth, Julianna Snow has suffered from an incurable neurodegenerative disorder that has had her in and out of the hospital, and has prevented her from going to the City Bible Church in Portland, Ore., where her family belongs.<\/p>\n
Tribune Media Wire reported that when 5-year-old Julianna was 4, her family made her an offer: The next time she got seriously ill, she could choose to go to the hospital or heaven.<\/p>\n
There, they said, she would be able to eat without a tube, play and run\u2014 everyday activities other kids get to engage in but ones that Charcot-Marie-Tooth disease, or CMT, has robbed from Julianna.<\/p>\n
According to the National Institutes of Health (NIH), CMT is one of the most common inherited neurological disorders, affecting about 1 in 2,500 people in the United States.<\/p>\n
The disorder impacts the peripheral nerves, which are outside the brain and spinal cord, and supply the muscles and sensory organs in the limbs.<\/p>\n
At first, Julianna’s severe case of CMT debilitated her arms and legs, but now it\u2019s targeting the nerves that control her breathing muscles, according to the wire service.<\/p>\n
Doctors predict that, the next time the little girl gets ill with something as minor as the common cold, she stands the risk of dying from pneumonia.<\/p>\n
In May, Michelle Moon, Julianna\u2019s mother, shared her family\u2019s story on The Mighty, a blogging platform for families coping with devastating disease and disability. In the post, she recounts a conversation with her 4-year-old daughter:<\/p>\n
\u201cMoon: You don\u2019t want to go to the hospital, right, J?<\/p>\n
Julianna:\u00a0 I don\u2019t like NT [naso-tracheal suction, the thing she hated the most from the hospital].<\/p>\n
Moon: I know. So if you get sick again, you want to stay home?<\/p>\n
Julianna:\u00a0 I hate NT. I hate the hospital.<\/p>\n
Moon: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?<\/p>\n
Julianna: (nods)<\/p>\n
Moon: And it probably means that you will go to heaven by yourself, and Mommy will join you later.<\/p>\n
Julianna: But I won\u2019t be alone.<\/p>\n
Moon: That\u2019s right. You will not be alone.\u201d<\/p>\n
–<\/p>\n
Source: Foxnews<\/p>\n","protected":false},"excerpt":{"rendered":"
Since birth, Julianna Snow has suffered from an incurable neurodegenerative disorder that has had her in and out of the hospital, and has prevented her from going to the City Bible Church in Portland, Ore., where her family belongs. Tribune Media Wire reported that when 5-year-old Julianna was 4, her family made her an offer: […]<\/p>\n","protected":false},"author":28,"featured_media":162904,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":[],"categories":[],"tags":[38,7],"yoast_head":"\n