My youngest brother, Tyler, was born seven weeks premature, just a tiny little thing. Still, doctors expected him to live a normal life. They were wrong. Shortly before his sixth birthday, Tyler was diagnosed with a terminal, genetic condition known as Mitochondrial disease. There is no treatment, no chance of remission, no magic pill.
Tyler became known as the sick kid in our family and I became his caregiver. Then shortly after Tyler’s diagnosis, my own health collapsed. They didn’t need to say it; the look on their faces was more than enough.
I felt as though my life was sucked up by a tornado, spit back out and shattered into a million and one pieces. It wasn’t supposed to be me.
To be diagnosed with Mitochondrial disease, the patient should have at least three organ systems that are failing or working inadequately. I did not yet meet the criteria, so the doctors held off on an official diagnosis. By 2012, my body began to send itself into allergic reactions for what seemed to be no reason at all. I was puking all the time, unable to maintain my weight. Testing still said I didn’t have Mitochondrial disease, and while this was a huge relief, it also left us without any answers. Doctors told us whatever was making me sick was likely not related to my brother.
Again, they were wrong. To control allergic reactions, doctors used a feeding tube to provide my body with an unflavored medical formula made of the most basic nutritional components. Almost immediately, the allergic reactions began to slow. It was such a relief to know that we were making headway in figuring out how to fix me, and I shifted from feeling sorry for myself to being thankful I was one who the doctors could help.
I started to get back into a new normal. Then my health crashed again. Four months later, the doctors told us they never foresaw my health progressing in the way it had. In a weird way, it made me feel better knowing the doctors were just as blindsided as I was. This time there would be no happy ending. This time it was for real. I could no longer believe that the doctors could fix me. I learned the hard way that not everything in this world will turn out like you believe it should.
A few weeks before the end of my freshman year of high school, I had another major surgery. Despite the complexity of this surgery, I was expected to recover well. Sadly, that never happened. Strangely enough, I came out worse than I went in.
Almost immediately, my mother knew what was up — she had previously seen it in my brother. Over the summer my organs began to shut down. I weighed less than ninety pounds, my immune system was attacking itself, my autonomic nervous system began to fail, and my digestive tract became paralyzed. To say I was falling apart was an understatement.
My parents tracked down the best doctors across the globe and all of them apologized: They had nothing to offer us. As if it were any consolation, these doctors told my parents that they hoped one day to be able to treat Mitochondrial disease, but for now, they didn’t have the funds or tools needed to discover new treatments. The heartbreaking reality was that science wasn’t smart enough yet to save us.
Still, my mother refused to accept this. Day in and day out she pleaded with us to see one more expert across the country, to comply with taking our medication regularly even when it made us sick, to consent to another clinical trial in hopes that we would get a better quality of life. She would tell us to never give up because we don’t know what promising medical breakthroughs were right around the corner. I have never figured out if my mother still believes there is a way to save, but I know it is not easy for her to know that two of her four children will likely die from this disease.
My mom helped me accept that this is a real thing that is happening to me. And this understanding has helped me come to the realization that no one in the world is able to tell you what is going to happen to you today, tomorrow, or the next day. Doctors didn’t think I would be able to walk across the stage at my high school graduation. They thought Tyler would have died before his fifth birthday. And I have a purpose, to help make a day when no doctor has to say, “I am sorry, there is no treatment, no magic pill, no surgery, no chance of remission.”
This post is graciously contributed by Michaela Shelley, of chronicallyawesome23.blogspot.com