She's 5 years old and she has never been able to play at the park, eat whatever she wants, go to Sunday school, or do other things like little girls her age. Julianna Snow lives in Portland Oregon with her parents and older brother Alex. She is a happy little girl who loves wearing sparkly, shiny, and mismatched clothes, and having her nails painted.
Julianna was born with an incurable neurodegenerative illness which is also called Charcot-Marie-Tooth disease. This makes it almost completely impossible for her to move on her own, and eat solid foods. Recently, Julianna and her family were told that her coughing and breathing muscles are so weak that when she gets so much as a cold, she will die shortly. The infection would land in her lungs, and cause a pneumonia.
Julianna's parents asked her if she would rather spend the last of her time at the hospital or in her room; which is decorated to be like a princess castle. Julianna told them, "I do not want to go to the hospital. I want to go to heaven." Her parents have taught her many things about God, the bible, and heaven, so she will be staying at home in her princess room. This means that her dad will have to continue with putting the NT tube, also know as naso-tracheal suction tube down her nose through her lungs.
----QUESTIONS----
1. If you were dying from this illness, would you rather spend your life at home or in the hospital? Why?
2. If you were Julianna's dad would you be able to accept her request of inserting the NT tube into her instead of the doctors doing it? Why? or Why not?
3. If there was a solution to curing Julianna's disease what would you do to help her and her family?
My opinion: I would rather stay at home where I could be with my family in my own room and bed. I'm not sure if I could have my dad do that for me, or do it for my own child. I would donate a lung or something for her, or if I had money to donate to them I would.
Replies
Excellent job!!
I would definitely choose my house because if I'm going to die so that I can die in comfort with family and friends around me at all times. I would accept her request because it's would be my dying daughters request which is unimaginable.
I would spend my last moments at home because I would be comfortable and wouldn't be around other people that are sick. I guess that the girl would have been more comfortable with her father inserting the tube then a doctor or nurse that she doesn't know. I would donate what money I have to find a cure for this disease.
I would rather spend my time at home because I can see my family all the time.
If I knew how to do it I would but if I dident then I would try to exsplain why I cant and have a nurse do it.
I this were me, I would want to stay at home make my stay my comfortable for me. Yes if I was a parent of Julianna I would do anything for my child. And if I needed help I could call a doctor to come over. And if there was anyway to help Julianna I would try to help the best I could
Yes, I would also stay at home to make my last days as comfortable as possible. I also think it is a good idea to have a doctor come over.
If I were in her position, I would rather live the rest of my days in my home. My house is where I am most comfortable. My house is where I could feel normal and not be constantly reminded that I was sick. If I were her parent, I would, of course, accept her request as long as I was taught by a medical professional on how to insert it. If there was a way to help Julianna, I would definitely try to help to the best of my abilities.
I agree, because at the hospital you would constantly have someone be coming in to see if you are doing okay and pricking you with needles. And I would also do it for her if I had help.
I would rather spend the end of my day's in my house because that way I can be where my family is and where I can communicate with people I love. If I was her dad I don't think that I would be able to do it myself because I feel that I would screw it up and harm her. I think that I would probably donate some money to help out.
Yes living in the hospital for the end would mean not being able to communicate with your family as much. And I agree, although I would want to do what she wants, I don't think I could do it.
-
1
-
2
-
3
-
4
of 4 Next