The onset was early and the progression of her muscle weakness was fast that she suffered from respiratory difficulties starting when she was 3 years old. It has had her out and in of the hospital for years.
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She read something about CMT disease and when she came across its symptoms, it was just like Julianna’s. “It’s one thing to do that when you know you’ll have a success at the end, but for Julianna, there is no success”, she says. Julianna obviously chose who she wanted to live and her decision should be supported.
If Julianna gets sick, Michelle says she will ask her again if she wants to go to the hospital or heaven, and “we’ll honor her wishes”.
Whereas Snow’s situation is at present steady, due to CMT, any germ that hits her may trigger her to die, even a typical chilly.
Julianna has been treated at the hospital many times for infections. “Like so many kids who have had to face life-threatening illness, she is wise beyond her years… I do not think that she will survive another illness, especially without aggressive intervention”.
Julianna has said she doesn’t want to go to the hospital.
J: I hate NT.
M: I know. So if you get sick again, you want to stay home? I hate the hospital. “But you know that probably means you will go to heaven, right?” You’ll go by yourself first.
J: Don’t worry. God will take care of me.
M: Right. So if you get sick again, you want to stay home.
They tell her that heaven is where she’ll be able to run and play and eat, none of which she can do now. We don’t have to be afraid of dying because we believe we go to heaven. Her parents gave her a decision more commonly made by adults: She could either continue going to the hospital, or die at home.
Moon’s blog posts have received praise and criticism from people including the medical ethics community, according to The Huffington Post. The issue has even divided the medical ethics community, the post reported.
“This doesn’t sit well with me. It makes me nervous”, Dr. Art Caplan, head of the Division of Medical Ethics at New York University’s Langone Medical Center, told CNN. “…I think there’s zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn’t really develop until around age nine or 10”, he added.
However, Dr. Chris Feudtner of The Children’s Hospital of Philadelphia disagreed.
Julianna Snow has an incurable and progressive disease called spinal muscular atrophy.
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As for Michelle’s response, she instructed CNN that she understands why others would have problem understanding her and Steve’s determination, however she additionally mentioned that it is exhausting to clarify how totally different Julianna is for somebody her age, based on WTKR.
