One in 150,000

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 laid 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 1700. 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. However, I maintain my eyes on the computer screen watching my
favorite internet family the Shaytards, whose happiness and laughter fill me with joy. 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 assistants, 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.