The Race Against Time: Living with a life-shortening disease

When I was just a growing boy, my head was filled with dreams of being a police officer.  I was about four years old, and I was positive that I was either going to be a police officer, a firefighter, a professional baseball player, a cowboy, or a movie star.  However, this was not to be.  As sports and physical coordination became more and more difficult, my parents and I knew there was something wrong.  After a series of doctors’ appointments and several misdiagnoses of what was wrong with me, I learned that I was born with a disease called Friedreich’s Ataxia.  I was thirteen years old by then, and I remember my parents calling me into the kitchen to tell me.  I soon learned that not only did the disease prevent me from walking in a straight line, but it also did many other things to me.  I was progressively getting worse, and things like speech and fine motor skills were being affected.  I found out that people with Friedreich’s ataxia can die at a very young age due to the thickening of their hearts.

 

I decided then that this was not supposed to happen to me and that fate had gotten confused.  I was going to correct this mistake.  My parents did a lot of research and found out that there were medical advances being made.  A new medication called Idebenone was being studied which helped some with the problems in the heart.  They also found that exercise was the best way to fight the progressive muscle weakening.  So I started an aggressive schedule of swimming, physical therapy, and weight-based exercise to fix this error of fate. None of this is a cure; at best, it is slowing down the progression of the disease.

 

Unfortunately, I recently started suffering from a new disease, one that has proven to be one of the most dangerous to mankind.  At the same time as I was diagnosed with Friedreich’s Ataxia, I also began to suffer from being a teenager.  I find that I want to impress girls; I want to fit in, be noticed and normal at the same time.  Friedreich’s Ataxia can make this very difficult.  I get noticed around school a lot, but not for the right reasons.  Tripping on thin air and falling down hasn’t been known to be the most attractive thing ever.

Sports appear to be very popular among teenagers – an activity that I cannot participate in.  However, I have been fortunate.  Many people with Friedreich’s Ataxia are in a wheelchair by my age. But my good fortune has been something of a double-edged sword. Yes, I was allowed to grow older with thoughts of being a pro baseball player, but eventually, those dreams were ripped away from me as I watched my body deteriorate.  I was an up and coming trumpet player in the seventh grade, and I began to play guitar in the eighth grade.  Friedreich’s ataxia has hurt me there too.  Due to the deterioration of my muscles, my musical ability with a trumpet has gone downhill, and I play guitar more like someone who picked it up sixth months to a year ago as opposed to the three years I have been playing it.

On the other hand, I have been fortunate as a teenager, and wonderful friends have surrounded me.  I am lucky enough to have a tight circle of many friends, and they have all been the driving force in my life.  On weekends we go to movies, or sometimes we just go to my house, hang out, or watch movies.

I have also been fortunate to have the family that I do.  My parents decided to become more involved in helping raise money toward research, and they created an organization called FAITH (Friedreich’s Ataxia In The Heart).  Each year, they, along with some family friends, organize a “dinner, dance, and silent auction” event which raises funds dedicated to Friedreich’s Ataxia research.  They also help another family with their event in the East Bay. My sister, Katie, has always been someone I can confide in, and we are very close.  My uncle Bill, my cousin Sam, and my dad have all been exercise partners, with my dad swimming with me and my uncle and cousin doing weight-based exercises.  We have begun hiking and are looking forward to a backpacking trip in the near future.

 

There are still things left for me to be.  I aspire to be a movie director, and I won’t let Friedreich’s ataxia take that away from me.  I am in a race against time.  While I battle against the gradual effects of Friedreich’s Ataxia, doctors are working hard to find a treatment, or better yet, a cure.  It is my hope that by following a strict regimen of physical therapy, exercise and diet, I will slow the progression of my disease, so when the cure is discovered, I’ll have bettered my chances of fulfilling all of my dreams.