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Fixing One Broken Item at a Time
Nearly nineteen years ago on a sweltering June morning a young couple, already raising two small children, welcomed a baby girl into their lives. Although she had arrived earlier than expected, the infant was everything they had hoped for weighing 5 lbs 8 oz, with a full head of light brown matted hair, and chestnut colored eyes. The couple’s oldest child finally had the little sister she had always wanted, and their son was now a big brother. The man and woman did not have extravagant careers or a large savings account, but they still had the love and courage to surpass the challenges they were about to face.
You see, shortly after the birth of this child her parents received a phone call that no parent ever wants to hear. The raspy voice of an aging man from the other end of the phone explained to the newborns’ mother that something was not right, and nine short days after the infant was born and released from the hospital she was brought back for extensive testing. After an afternoon of poking and prodding it was determined that the child was born with a metabolic disorder that would alter her mental, physical, and emotional well being if drastic diet changes were not made immediately. That infant was me, and this disorder (Phenylketonuria or PKU) has, to some degree, grown on me and become another aspect of my everyday life.
As with many disorders and diseases researchers are constantly searching for cures in hopes of improving the lives of those who are affected. However, having always lived a life surrounded by a restricted low protein diet I could never imagine suddenly being able to freely eat what I please without worrying that my health could be diminishing before my eyes. Many people have asked me if I would use a cure for Phenylketonuria if it was available, and I have never been able to give an honest answer. Cures are used to ‘fix’ an issue in a person’s body, but does the need to modify a diet automatically mean that a person is ‘broken’ and needs ‘fixing’? I’m able to attend school, socialize with others, begin a career, and raise a family, so is there really anything ‘broken’ about me, and is it right that society wants to fix what was never broken to begin with?
My concern with whether or not Phenylketonuria should require a cure arose nearly three years ago when I was approached by my physician about a clinical study that was taking place. This study involved a new medication that was supposed to help my body break down food, therefore making my diet less restrictive. Initially this new medication sounded like a cure. I later learned that was not true, because the medication did not eliminate the necessity of other medications, routine blood tests, and dietary modifications which are a part of my treatment. However, at the time I was still under the impression that a cure was being presented to me, and because I was sixteen it was up to me to determine if I would benefit from this ‘cure.’
Prior to being admitted into this study I attended a meeting held at my clinic, along with other patients considering enrolling in the study. Here we were able to learn about the medication and ask questions to aid in our decision.
While at the meeting I was able to chat with the other patients, some of which I already knew on a personal level. One woman in particular caught my attention, and I will never forget the conversation we had. She was a tall, lanky woman with long mangy hair and stains on her plain pink t-shirt that only a child could make. As it turned out the child who left the stains on the woman’s clothing was her five year old daughter who was also born with PKU. That little girl was the reason this woman was attending the meeting. She was considering enrolling her daughter in the study. Wanting the input of someone older who deals with the same trials and errors as her daughter, she asked me why I was considering getting involved in this study. I replied that I was here purely out of curiosity, and this left her astonished. “Does that mean you might not join this study after all?” She had asked me. I simply nodded and told her I was not sure yet if I would be enrolling in the study. Once again she was thrown back by this news, and she proceeded to ask me why I wouldn’t want what we had thought was essentially a cure for my disorder. Not exactly sure why I didn’t want a cure, I turned the question around and asked her, “Why do you feel your daughter needs this cure? Is there honestly anything wrong with her aside from her eating habits?” This left both of us in silence as we pondered, because it was obvious neither of us knew the answer to the other’s question.
It wasn’t until after the meeting was over and I, the mother, and the several other patients were packing up to head home that either of us came up with a semi logical answer. I sought out the woman when I had a moment to talk and simply told her that I had come out of disbelief. After living with this disorder for over a decade and a half I could not believe there really was a cure being developed, and I had to see for myself. She responded that she wanted her daughter to participate in this study, because she wanted to give her the best start in life that she could, and she wanted to ‘fix’ her daughters PKU. That’s when I started to wonder why everyone feels the need to fix everything and anything that isn’t perfect. A child is not like a new car. It is not going to be perfect, and when an issue arises you cannot simply take it to a mechanic to have it fixed. When a child is born I have always been under the impression that the parents are in it for the long run, and that child is their responsibility despite any faults the child may have. However, after speaking with this mother I am not sure if I should assume she really is doing what’s best for her daughter or if she is trying to find a quick fix for her PKU, because she does not want to be bothered by it anymore.
Shortly after this incident my older brother was asked something that got me thinking once again. My family has known for a long time that my brother is a carrier for PKU, which means although he does not have the disorder he could potentially have children with it. Anyway, one night during a family gathering I was discussing baby names and taking guesses on the gender with my massively pregnant aunt and other ladies when suddenly someone asked if it would be possible for my aunts’ baby to have PKU like I did. Of course, being the one who actually lives with PKU, I was the one who explained that my aunt could only have a child with this disorder if she and her husband were carriers like my brother. Just as quickly as it was brought up the subject was dropped, and it wasn’t until later that night when my brother was approached by this woman that I realized she had not completely let the thought go. The woman wanted to know if my brother had any intentions of having children someday. My brother told her that eventually down the road he would like to settle down and have a family, which was something this woman could not fathom. In the most sophisticated tone she could muster up she informed my brother, “But your children could have a disorder. Are you sure you want to bring a child into this world when you have that risk?” As if he didn’t already know the risk was there. Because he grew up with me and saw no problem with my quality of life, even though he understood this woman’s’ logic, it still frazzled him that she thought one risk should determine whether or not he had children. “If they’re born with PKU I’ll deal with it then,” my brother replied.
Later that night my brother came to me and told me what had happened, and together we sat in our kitchen confused. Neither one of us could understand why this woman who barely knew my brother cared if his children were born with a disorder or were one hundred percent healthy. It was at this point that I realized it was not the woman’s fault. She was simply following the standards that society has set for how a person should look, act, and be. For example, how many times a day do you turn your television on and find that the main character of your favorite television show is someone in a wheelchair or a child with Down syndrome? You don’t. That simply isn’t what society advocates, and that is not what society wants everyone to view as a typical life. And yet at the same time we pretend our lives are perfect and that those born with diseases, disorders, or disabilities are the outcasts, but we are all different. Isn’t it those subtle differences that make our lives interesting and make each of us unique?
I am a firm believer that diversity is what makes life interesting, and no matter what everyone has obstacles and challenges that they must face in life. As far as medical challenges are concerned I live with Phenylketonuria, some people live with asthma, heart diseases, allergies, arthritis, and so on. If everyone you came across was problem free in every way what would doctors do for a living? Then again, for some reason, even doctors want to fix people. Maybe it’s because they want to better the lives of their patients and improve the quality of life in our society, or maybe it’s because they feel difference equals broken and broken requires fixing. How exciting would it be to live in a world where everyone is perfect, and where do we draw the line? If we are determining which diseases and disorders need ‘fixing’ today, then will we be deciding which hair and eye colors need to be changed tomorrow? This is a decision that only we can make for ourselves.