Posted on 10/27/2015 3:08:20 PM PDT by windcliff
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: The next time she got seriously ill, she could choose to go to the hospital or heaven. There, they said, she would be able to eat without a tube, play and run— everyday activities other kids get to engage in but ones that Charcot-Marie-Tooth disease, or CMT, has robbed from Julianna.
At first, Julianna's severe case of CMT debilitated her arms and legs, but now it’s targeting the nerves that control her breathing muscles, according to the wire service.
Michelle Moon, Julianna’s mother, shared her family’s 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:
“Moon: You don’t want to go to the hospital, right, J? Julianna: I don’t like NT [naso-tracheal suction, the thing she hated the most from the hospital]. Moon: I know. So if you get sick again, you want to stay home? Julianna: I hate NT. I hate the hospital. 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? Julianna: (nods) Moon: And it probably means that you will go to heaven by yourself, and Mommy will join you later. Julianna: But I won’t be alone. Moon: That’s right. You will not be alone.”
God also will be in heaven, and he will love her more than her parents do, Moon and Steve Snow explained to their daughter.
(Excerpt) Read more at foxnews.com ...
Good points. The parents including the child in the decision IMO is an attempt to appease their own guilt. They need some spiritual counseling
Well put.
Thanks.
HAHAHAHAHAHAHAHA I’d like to read this article but I can’t get passed that hilarious headline HAHAHAHAHAHAHAHA
At first, Julianna's severe case of CMT debilitated her arms and legs, but now it’s targeting the nerves that control her breathing muscles, according to the wire service.
CMT is one of the Muscular Dystrophy diseases. And according to NIH and the CMT association websites normal onset of the disease is in early adulthood and the disease has a slow progression. It also says that near normal life span can be expected.
From birth onset and end stage of the disease at 5 years old would seem to be atypical for this disease.
Jehovah’s Witness kids don’t even get the Heaven option
They have to push through the best case scenario first. Once this gets by, the rest of the euthanasia cases will breeze through.
When there is really no option to change anything, then the courageous thing in my opinion is to bring my child home to live the best life in the time left.
The kinds of treatments left for someone like this wee one are torture treatments with no upside. Sometimes time is not, in my opinion the best thing. Particularly when there is an alternative.
CMT is one of the Muscular Dystrophy diseases. And according to NIH and the CMT association websites normal onset of the disease is in early adulthood and the disease has a slow progression. It also says that near normal life span can be expected.
From birth onset and end stage of the disease at 5 years old would seem to be atypical for this disease.
___________
Sound like she has a rapid onset if she is having respiratory issues at age 5
I got the same thing with Chrome a few minutes ago.
In CMT type 1, progression of the disorder is usually slow even if it presents in early childhood. In some children or adolescents, there may be periods of rapid progression that last for months or years followed by prolonged periods without change (plateaus). In some cases, the progression occurs during growth spurts, but not always. The pattern of progression and plateaus is distinctly unpredictable. The possibility of superimposed acquired neuropathy may be considered if a change in clinical progression is noted, especially in adults.
My wife had CMT. I lost her to “complications” August 29, 2011. Hers was not nearly as severe as this little girl’s case. My wife lived to 63 years.
I miss her.
If you haven't been in their shoes, don't criticize what this family chooses to do. I've been there, and I can tell you they face no good options ... none.
The child is going to die. She is not choosing between life or death, rather where she will die, at home or in a hospital. The words in this article are not the only conversations this family has had.
The parents just needed that support from their child for s hard decision. I can’t blame any of them. What a shitty world where the good and innocent die while crazies run loose.
With medical science at the threshold of so many possible cures who is to say that this child may not be cured? Also God still does miracles. We should choose life and leave death only in God’s hands.
I wonder if these parents have searched for possible cures or at least helps that may be out there apart from the USA medical system. The medical system in the USA is limited and doesn’t utilize all of the medical treatments that may be available in the rest of the world. It is also amazing what health cures can accomplish for some people in some cases. The USA medical community is basically completely ignorant about cures and helps that may be available apart from medicine itself. There is so much information out there that it needs to be searched out.
When they ask the child about if she wants to die and go to heaven have they told her how nasty it can be to die, maybe more nasty than the medical procedure she doesn’t like. It may be awful to go through the process to die. It not an option not to suffer. Most everyone wants to live as the desire for life is built into us. This child is so young that a longer life may give way to a cure and a life of great value and length. Of course for the child to die quickly may be easier on the parents.
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