Hannah Soyer
[email protected]
Julianna Snow is 5 years old. She has a form of muscular dystrophy called Charcot-Marie-Tooth. She has had to deal with a lot of medical scares so far in her life and has been hospitalized various times. But when her parents asked Julianna if she wanted to go to the hospital the next time she got sick, Julianna said she didn’t want to and would rather go to heaven instead. Julianna was 4 when she told her parents this, and her parents have decided to respect her wishes.
A little over a month ago, California Gov. Jerry Brown signed landmark “right to die” legislation, allowing terminally ill patients to legally obtain lethal drugs in order to end their own life. I’m not sure how I feel about this legislation. Some people could say that I am terminally ill because of my physical disability, and I don’t think these sorts of options should be available to others in my same situation. However, the way the law is currently means that two doctors have to come to the consensus that the patient has six months or fewer to live in order to receive the medication, meaning it could not be used by people with disabilities whose lives are not seriously at risk at that moment. I suppose I couldn’t actually have an opinion on this law unless I was in that situation. What I do know is that it is designed for adults.
Julianna is 5, and while many supporters of her parents’ decision are saying that she is clearly wise beyond her years, I don’t think it’s possible for a 5-year-old to fully understand the gravity of the decision she is making. Also, people have a bad habit of claiming people with disabilities are wise beyond their years simply because they have a disability. Julianna may very well be wise beyond her years, but she is still 5 and doubtless only has a 5-year-old’s understanding of death.
When I was younger, I got sick frequently and ended up in the hospital quite a bit as well. It was absolutely horrible, and it makes sense that a 4-year-old wouldn’t want to go back. In fact, when I was in fourth grade, there was a time when I was so sick that I remember wanting desperately for it to be all over. However, my parents did not allow me to simply give up fighting, and I am so incredibly thankful for this.
Doctors have estimated that if Julianna were to get sick again and survive it, she would live the rest of her life on a respirator. Some people may see this as reason enough that her quality of life would be nonexistent and thus living would not be worth it. But I know many people on respirators and ventilators who live great lives. To say that the consequences of Julianna’s next bout of sickness don’t warrant her continued life not only completely dismiss that she could still have a very bright future, it also disregards all of the other people out there dealing with similar issues and still living life to the fullest.
If Julianna were 18 and making the decision to not return to the hospital, I would still be upset, but I would be able to respect her family’s decision a bit more. Her parents owe it to her future to go against their 5-year-old’s wishes in this instance, and society owes it to Julianna and others like her to realize that her life, though perhaps more difficult than the norm, is still worth fighting for.