— Ellie Vandiver, RN, BSN, Biomedical Sciences Teacher, University City High School
One in 150,000
A post by Kyle Underwood, a PLTW Biomedical Science student, University City High School
Editor's
note — In the PLTW (Project Lead the Way) Biomedical Science program,
students take on the roles of biomedical professionals and work
collaboratively to understand and design solutions to the most pressing
health challenges of today and the future. For Kyle Underwood, PLTW
Biomedical Science is more than a class — it’s his reality. As a child,
Kyle was diagnosed with a rare genetic disorder known as Hunters
Syndrome, but he’s not letting his condition stop him. In fact, he’s
making the most of his situation — college, a career, and a chance to
find a cure.
If you know a PLTW student who has a great story to share about his or her PLTW experience, please ask them to reach out to communications@pltw.org.
As I exit the car and begin to walk the endless concrete path to school, my breathing becomes heavy and my legs become weak; but this is normal. I notice a mother and her young son, and I am reminded of my past. At the age of four, I laid eyes upon my baby brother for the first time and remember thinking he looks just like me. A week later we both lay next to each other in a hospital bed, where the noise of the machines connected to our bodies drowned out emotions of sorrow. By chance, a doctor suggested we undergo genetic testing. This is when I was given the label, the reality that I am one in 150,000 to be stricken with a rare metabolic disease called Hunters Syndrome.
At school I am one in 1,700. As I move through the massive crowds, my peers seem like giants in comparison to my four foot-tall body. Out of breath while my backpack digs into my back, I continue on, eventually ending up at my biomedical classroom. As my teacher begins to discuss genetic counseling, I revisit the memory of when I was briefed on the horrors of my disease, Mucopolysaccharidosis. This disease is caused by a mutation within the Iduronate 2-sulfatase gene that is responsible for producing an enzyme that breaks down sugars. My brother and I lack this key enzyme and our lifespans could be filled with many struggles including wheelchair dependence, mental handicaps and early death. Given the difficulties that I was going to face, fear was an understandable response. However, through my strength and my doctors’ efforts I worked to overcome my limitations and not let them define me. Ultimately, my brother and I were diagnosed with a mild form of the disease.
At lunch I am one in 50. I head to my meeting for Hope for Uganda, a community service club that I helped to create. I enter a room of students and hear the president discussing a volunteer opportunity at a local hospital. As she speaks, my mind drifts to my own reality, where I am routinely confined to a hospital bed. I am exhausted by the sounds of a blood pressure machine beeping, an IV bag trickling, and observations of a blank ceiling. Knowing that my skin will soon be punctured, panic begins to set in. Looking to my left I see my brother, and to the right I see the needle. This encourages me to find the strength to help my brother by ceasing to flinch, and lead by example. I understand now that I have no choice but to look beyond my label, my number, my condition and recognize that I could be the person that ends this routine. This is when I realized that I want to be part of the research that finds the cure for my condition.
At home I am one in 4. When I arrive, I immediately rush to the couch, allowing my body to relax so my brain can take over. I see my mother and father conversing about my medical bills and appointment schedules. My father struggles daily with balancing his concerns about my future health, while operating a flooring business and nurturing our bond as a family. My mother, who hoped to achieve a management position at a retail store, became our assistant, planning countless medical appointments, weekly infusions and over a dozen surgeries. Thus was done to correct my ability to walk, hear, and further help me to function independently in society. These routine sacrifices my parents have made, can be alleviated when I pursue research-based science to help find cures for genetic diseases.
Before bed I am one of 1. As I look upon my day, I am reminded that I can escape this. Out of all people stricken with my disease, I have the mental capabilities to contribute to find a cure. Being the first in my family to pursue a college education will create change not just for my family, but countless others. After multiple visits to doctors and hospitals, my mind is accustomed to the medical world. When I was first diagnosed, expectations for my future were low. But now, I have risen to overcome adversity, break stereotypes, and make a lasting impact on my world, by getting the most out of my education by becoming a biochemist geneticist.
Through all this, I had the opportunity to enroll in a four year Biomedical Pathway provided by Project Lead The Way. Within this pathway I have been exposed to many ideas and hands-on experiences that have helped prepare me for the medical field. Such experiences include grant writing, creating and performing scientific experiments, and presenting various ideas and innovations to members of the community. I was engaged in question-based learning focused and problem solving that has had a profound effect on my intellectual development. Within this pathway during my freshman and senior year, I was exposed to global issues and involved writing two grants to increase educational opportunities in Uganda.
As I reflect on this experience, I know that I have gained knowledge that will contribute to my success in college. As a culmination of my development, I have the opportunity to actively participate in a hospital setting through internships. I enjoy being able to use my intellectual growth in the service of others. My academic development and curiosity in this pathway have helped me to grow both as a student and a person, and I feel confident that these attributes will serve me well as a student at University of California, Los Angeles.
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