For the longest time, parents have to make decisions for their kids. This is because kids are either to young or naïve to make decisions for themselves, so parents do it for them. However, at what point in a child’s do kids make life-changing decisions for themselves?
There is a 5 year-old girl named Julianna Snow. Ever since she was born, she has had an incurable neurodegenerative illness called Charcot-Marie-Tooth disease. This means that the peripheral nerves are damaged around the brain and spinal cord. Julianna is stable right now, but the muscles that control her breathing are so weak that if she gets a simple cold, she could die. According to Julianna’s doctors, she most likely will have to end up on a respirator for the rest of her life. At this point, Julianna’s parents did not know what to do. Should they let their daughter live a long painful life on a respirator or should they make the heartbreaking decision to take her off the respirator and end her life? They decided to do what most parents would not. They let Julianna make her own decision. This is a conversation between Michelle Moon, Julianna’s mom, and Juliana. 
Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?
Julianna: Not the hospital.
Michelle: Even if that means that you will go to heaven if you stay home?
Michelle: And you know that mommy and daddy won’t come with you right away? You will go by yourself.
Julianna: Don’t worry. God will take care of me.
Michelle: 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 the hospital may let you have more time with mommy and daddy.
Julianna: I understand.
Michelle: I’m sorry, Julianna. I know you don’t like it when I cry. It’s just that I will miss you so much.
Julianna: That’s OK. God will take care of me. He’s in my heart.
Julianna chose to live a short, happy life instead of a long, hard life filled with many hospitals visits and a 24/7 respirator. She wanted to enjoy life while she could. She wanted to go to school, play with her friends, and run around on the playground. In the mom’s blog, she said “We believe that sometimes it’s an act of love not to do ‘everything’ to extend life and focus instead on giving your child the most beautiful life possible for as long as you are allowed.”
I found this quote and story very inspiring. Julianna is only 5 years old and knows the life she wants to live. She is very mature for her age and her parents respected her decision to not continue going to the hospital. I understand why her parents allowed her to make her own decision about her life, but it put them in a difficult position. They obviously did not want to see their daughter continue going through pain, but they also did not want to see their daughter die.
This case has created a lot of debate about if kids should be making such important decisions like these. Truthfully, I believe think there is neither a right nor wrong answer. Either decision that you make, there will be consequences and benefits. Personally, I think that I would make the same decision Julianna’s parents made. I would do anything to make my daughter happy and I would rather have her live a short happy life instead of a long, hard life. What do you think you would do in this type of situation?
I do believe children can make their own life decision. After all it is their own life not their parents’. However, I think one condition is that parents are more experience than children, appropriate guide is necessary before children make decision. If children’s decision didn’t go very well, parents may need to know how to help them out or guide them out. In the story of your blog the little girl choose to live a short happy life. However, after she gone she left pain to her parents. I think maybe she should choose cure herself and live a longer happy life is more wisely. See, different people have different opinion. This is just mine. When kids are not old enough to make their own decision I thin parents should help them choose wisely. Here is the link. https://www.kidsmatter.edu.au/sites/default/files/public/KMP_C2_HCMD_HelpingChildrenToChooseWisely.pdf
I’m very happy you posted this, Alyssa, for I have a personal connection with a story like this. While this may not be an “experiment”, per say, it is important to recognize the differences in how we develop into adulthood, and the choices that we make effect our lives. Similar stories have been told, such as one here, though this was a grown woman who might’ve understood her consequences more, and ended her life via assisted suicide, she chose to avoid months of suffering and accept her fate, just as this little girl. I think it is important to value the choices of each person, regardless of age. If a person has to depend on machines alone to live, it is not truly much of a life at all. You are taking away the valuable things in life, such as playing with their friends, being on a sports team or wining trophies. Of course, there are pros and cons to both, as stated here. It does not take extended research to see the benefits to ending ones life upon their choosing, regardless of their extent of time on Earth. For many, it may be a religious matter which is understandable, but I believe that we should be able to look past that. Decades ago, people could die because of the simplest cold, and their loved ones would say it is just “Gods plan”, where as now we try to extend the lives of the ones we love by plugging them into a machine to “make them better”, when in retrospect this may very likely be keeping them from passing on into God’s hands. I am not much of a religious person, but seeing each side to every story, and I believe more research should be done to discover why this is so frowned upon, although this may be difficult since you cannot ask the opinions of those who personally go through this process.