Friday, February 26, 2016
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.
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.
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.
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.
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.