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It Wasn’t Supposed To Be Me Mitochondrial disease in children

My youngest brother, Tyler, was always known as the sick one in our family.  Tyler was born seven weeks premature. He was a tiny little thing but relatively healthy. The doctors promised Tyler would lead a normal life once he left the NICU. They were wrong. Shortly before his sixth birthday Tyler was diagnosed with a terminal, genetic condition known as Mitochondrial disease.

Mitochondrial disease in children

This disease has no treatment, no chance of remission, no magic pill and worst of all no cure. It was for this reason our family friends often labeled Tyler as the sick kid in our family. It was true, neither I nor my other two siblings had any obvious signs of the condition. Because of his health, I grew up believing myself to be his caregiver. I held onto this belief until my health collapsed shortly after Tyler’s diagnosis. They didn’t need to say a word; 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. On that day, my belief took a new shape. I no longer had the mindset that it was not supposed to be me. After I cried it out, I picked myself up and forced myself to believe I was going to get through this with the help of my home team.

That was until my health began to worsen around the time of Tyler’s diagnosis. At this time, my health was never made a priority because I always felt bad to complain when

Tyler was often in and out of the hospital for weeks. To be diagnosed with Mitochondrial disease the patient should have at least three organ systems that were either failing or working inadequately. I did not yet meet the criteria, so the doctors brushed it off as nothing too serious. 

By 2012, my body began to send itself into allergic reactions for what seemed to be no reason at all. I was unable to maintain my weight on my own and puking was a regular occurrence in my life. Procedures revealed I did not have one of the diagnoses my brother faced. While this was a huge relief, it also left us without any answers as to what was making me sick. Since I didn’t have that diagnosis the doctors told us whatever was making me sick was likely not related to my brother. Little did we know that was anything but true… To control the allergic reactions the doctors placed a feeding tube to provide my body with 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. I knew there were many others, my brother included, who were not as lucky as I was. My beliefs shifted from questioning why this would happen to me towards being thankful I was one who the doctors could help.

I thought I was able to cope with this new normal, but my world fell apart once again when it came as a shock to us that my health was deteriorating. Four months later, the doctors reassured my mom and me by saying 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 noticed my beliefs altered as I went through these hills and valleys in my life. I had to learn the hard way that not everything in this world will turn out like you believe it should.

A few weeks prior to the end of my freshman year of high school, I had another major surgery. Despite the complexity of this surgery, it was believed that I would recover well. Sadly, that never happened. Strangely enough, I ended up in a worse position when I came out of the operating room versus when I went in. Almost immediately, my mother caught on to the physical cues before I had to say a word. My mom already knew what to look for because 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.

I grew up believing the doctors knew all the answers. I quickly learned that belief was anything but true. My parents sought after some of the best doctors across the globe and all of them apologized to my parents because they had nothing to offer us. As if it were any consolation, these doctors told my parents one day they hoped they could save kids like my brother and me, but for now, they didn’t have the funds or tools needed to provide us with treatment options, much less a cure. Our geneticist told my parents and me medical research was not far enough along to help us. We were another family she had to inform of the heartbreaking reality: Science wasn’t smart enough yet to save us.

Being the good parent she is my mother would not accept this. Day in and day out she would plead 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 us out there, but I know it is not easy for her to know that two of their four children will likely die from this disease.

My Mom's Unwavering Hope

My mom is the reason I have allowed my beliefs to take on a new form. Without her I would still be beating myself up over the fact that this wasn’t supposed to happen to me. Once I accepted the fact that this happened to me, I was able to stumble upon some newfound growth that has led me to my current beliefs. I came 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. Honestly, if my family had listened to everything the doctors and other healthcare professionals have told us then I would have never been able to walk across the stage at my high school graduation. My little brother, Tyler, would have died before his fifth birthday. I would not be living my days out with a higher purpose to ensure that no teenager, child or adult will ever have to listen to the doctor say,

“I am sorry, there is no treatment, no magic pill, no surgery, no chance of remission, and worst of all no cure.”

This post is graciously contributed by Michaela Shelley, of

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