English 15s Rhetoric and Composition
It's a warm summer day, and you and your child are outside playing in the yard. Suddenly
your child stumbles and falls, up to this point in your life, your child has made every childhood
milestone like walking, talking, potty training, etc. But suddenly he starts to become a little
clumsy. Fast forward three months later and you are told your child will die in approximately
three years of a rare brain disease. This was the case for my family. If advanced new-born
screening at birth would have been done at birth, we would have stopped this disease dead in its
tracks.
My brother Tyson passed away from a rare brain disease called metachromatic
leukodystrophy two years ago. He started off as a very healthy young boy. We noticed that he
was losing the ability to walk and run. Not to the extent that he couldn't, but to where he would
stumble and fall out of nowhere. This went on for about two months until we decided to take him
to a neurologist. Immediately the doctor knew his MRI scan was not good news. From that day
on my life, as well as my family's life, was changed forever. Two years went by quickly, after all
the trips and fundraisers. It was still my family and this disease. Now that boy who was
stumbling is now completely immobile. Soon after he lost all ability to eat and talk. About a year
later we were saying our goodbyes and spending every breath with my dear brother.
I like to consider myself an expert on this topic but what better people to ask other than
my mother and father? My parents have had so much firsthand experience with this disease as well
as newborn screening. In the coming year, my father will be speaking in front of the U.S. Senate
on this very issue. I decided to ask my parents a few questions relating to this topic as well as my
brother's specific disease in relation to other fatal diseases. The first question I asked him was
simple. Why should the federal government fund advanced newborn screening? His answer was
simple, he said there is no price tag on a person's life (Balek). In my opinion, this is the perfect
answer to the question of no if and or buts about it. I asked a follow-up question about where this
money should come from. He said it should come from our Congressmen/women's salaries. He
said they are far overpaid for the little they do. His main takeaway from this was they can raise
millions for a congressional dinner but not for something that will one day save thousands of
lives (Balek). Money should not be an issue when it comes to medical necessities. During the
interview, I decided to change my course of questioning and ask about Tyson's disease
specifically. I specifically asked them how the disease has affected their marriage. They said that
it tested us as well as brought us together (Balek). They said there were times when they
thought they were going to get a divorce, but Tyson brought them together. I asked them how it
...
