I used to hate the color green. As a
child my favorite color was always blue or purple. To be honest, I thought
green was an ugly color. However, my mind quickly changed when my brother was
diagnosed with Mitochondrial Disease. The color green became a symbol for the
fight to find a cure. I soon realized just how important a cure was for my
brother. So I chose to set out to find a cure to save my little brother, but
little did anyone know I would need that cure for myself as well.
There
are some memories that are etched into your brain like an Etch A Sketch.
However, unlike an Etch A Sketch you are unable to erase these memories. You can’t
just shake the memories out of your brain and hope the page will be cleared
away. Sadly, that’s not just how it works. On April 16th, 2011 my
life changed in one short moment and nothing has ever been the same since. This
will be a day that is forever etched into my brain as a memory, but it’s
certainly not a good one. No matter how hard I try I can’t get that day out of
my head. Nothing has ever been the same; that day will always be written down
as the worst day of my life.
On
that Spring Saturday in April my youngest brother, Tyler had a seizure in my
arms. I was only twelve. I remember screaming for help, thinking that this was
all my fault, and the worst of it all was seeing my nine year old brother,
Brycen see his brother being carried out the door seizing. Brycen had never
seen Tyler’s first seizure, so this was all new for him. We didn’t even know if
our brother would survive the night. He didn’t handle it well but I couldn’t
say I did either. We both collapsed to the floor never letting go of each other. All he did was scream. All I did was cry. We were all alone. We laid there for what seemed like hours. I
could hardly console him, much less myself.
Tyler
survived the night, but he was unconscious laying in a bed in the Pediatric
Intensive Care Unit. His little five-year-old body received a beating. Tyler turned
blue within minutes of my parents rushing him out of the house. We didn’t call
an ambulance because at the time of his first seizure it took well over an hour
for an ambulance to reach our house. Tyler didn’t have that time. He began to
turn blue within a matter of minutes after he had left our house. My parents
were able to receive help at the fire station but that poor boy continued to
seize. He spent over two hours seizing on that night. Tyler spent the next
twenty-four hours unconscious, but he pulled through without any lasting
effects from the seizure.
A picture of Tyler and I taken on New Years Eve 2010
The
next week Tyler was diagnosed with Mitochondrial Disease. Mitochondrial disease
is a degenerative and terminal, genetic disorder. I cried. Our family knew a little
boy with Mitochondrial Disease. His name was Zach and although Zach was only
three he was so sick. He passed away two months after my brother was diagnosed.
Thereafter
my life began to change even more. It happened so fast and I lost all control. The perfect happy life I once had no longer
existed. It was like my life was sucked up into a tornado, spit back out again,
and shattered into a million and one pieces. I too became sick. The first time
it happened, I had to stop eating all food. Yes, all food! Imagine living a
life without Halloween candy, Christmas cookies, Easter eggs, and even your own
birthday cake! I received a feeding tube. I got better, I was so thankful. I
thought maybe this was it. I knew I could manage this. It was not even close to
compare to what my brother goes through everyday. I was okay. I found my new
normal, although life was anything but normal.
June 2012
Nine
months after I put my life back together it shattered again. The catch was this
time it would be so much worse. My feeding tube was no longer working. Everyone
told me this would never happen! They never believed I would wind up in the same
position as my brother has. I cried and cried. The strain mentally was almost
as bad as it was physically. I knew what all this meant. I already knew what I
would soon be facing, because I’ve seen my brother face this fight. I think that
was the worst part, knowing what was before me. That little fifteen year old me
was so scared.
September 2013
Just
a few months later Mitochondrial Disease stormed its way into my life, again.
However, this time it was pertaining to myself not my brother. It became
official. The top pediatric specialist who treats one of my diseases told me I
would never get better and even if I did I would still be very sick and rely on
tubes to keep me alive. How can doctors tell a person there’s nothing they can
do to make things okay again? Like dominos in a domino line my organs have
started to fall down and fail one by one. Organs failing right in front of your
eyes and there’s nothing you can do about it. No treatment, No radiation, No
chance of remission, No surgery, No magic pill, and worst of all No cure.
So
here I am two years later still breathing, still living, and still fighting.
I’ve rebuilt my life to the best of my abilities. I have chosen to live my life
just as any other person would because, just like you I don’t know what tomorrow
will bring. Maybe not today, but maybe five years from now what if the doctors
were able to find a cure and they would be able to fix me? If they had a cure I
would be able to have a whole future ahead of me and that’s a lot to think
about.
February 2016
When
I set out to find a cure to save my brother I never expected I would have all
these opportunities available to help me do so. I’m still out there searching
and fighting for a cure. It’s not only about my brother anymore. It’s about the
child who is born every fifteen minutes who will develop Mitochondrial Disease
by age ten, the child who lost their sister or brother to the disease, the
parents who are struggling to find a diagnosis for their child, the mom who is
unable to take care of her four children because she is too ill, the teenager
who is fighting to make it through high school despite their illness, and
anyone who is still pursuing their dreams even though their body is failing
them.
The
color green isn’t so bad anymore. It is now one of my favorite colors next to
blue, of course. Mitochondrial disease has become a blessing and a curse.
Without Mitochondrial Disease I would have never had some of these amazing
experiences I’ve been gifted with, but I also see it as a curse as I see both
mine and my brother’s bodies slowly shutdown on us. My life may not ever have a
happy ending but it’s not about the happy ending it’s about the story and if
you ask me I think it’s a damn good story.
