A new kind of sibling bond: their fight against Mitochondrial Disease - Care+Wear

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A new kind of bond: Siblings fight against Mitochondrial Disease

  • 3 min read

There aren’t too many times in my life where I can remember not being wrapped up in the world of hospitals, doctors and medical treatments...

I was only seven years old when my youngest brother, Tyler, came crashing into this world 7 weeks early. From the very start, we were thrown into a life without answers. The doctors were unable to determine what was wrong with Tyler for years. At the age of four, Tyler was diagnosed with Eosinophilic Esophagitis, an autoimmune disorder that occurs when the eosinophils (a type of white blood cell in the body) attack food proteins in the esophagus. However, Tyler's health only deteriorated from there: Mitochondrial Disease, Total Digestive Tract Paralysis and Dysautonomia are just a few of the conditions on the lengthy list of his diagnoses.

In March of 2012, Tyler's digestive tract completely shut down due to digestive tract paralysis. It was at this point that Tyler underwent his first PICC line placement to start "TPN", or Total Parenteral Nutrition, an IV nutrition therapy. Once my Mom had a proper understanding of how to practice PICC line and central line care, she began to teach me the basics and entrust me to take care of my brother, so that I would be able to watch him for short periods of time while she ran to the store. I wasn't yet fourteen, but I already knew how to administer medications through his feeding tube. However, I quickly learned there's a huge difference between feeding tube and central line care: the biggest difference being a person’s feeding tube doesn't have to be sterile, whereas a central line must always be sterile to avoid any chance of bacteria entering the bloodstream through the central line, thus causing a deadly infection. In other words? Managing central line care is a huge responsibility and should not be taken lightly.

Beautiful Michaela wearing our Ultra-Soft PICC line cover

While I was learning how to care for my little brother, I had no idea I was also learning how I would need to care for myself. In 2011, my body began to fail me and in the coming years life decided to throw me a curveball as I too was diagnosed with Mitochondrial Disease, Gastroparesis, Dysautonomia, and more. I had a feeding tube shoved up my nose, down my throat and into my stomach. There was no need for training by a nurse on how to use the feeding tube pump because sadly I already knew how. The nurses didn't even have to explain the placement procedure. I already had an understanding of how it worked.

I did benefit from the prior knowledge of my brother’s experiences. I felt prepared and equipped to handle whatever was thrown at me, though this prior knowledge also scared the hell out of me at times. I had seen just how hard my brother had fought to get to where he is today. I witnessed the pain, the tears and helped support my brother through those difficult times. Sometimes I was terrified going into different medical tests, procedures or surgeries because I remembered what the outcome was for my brother and I didn’t know if I would have the same (positive or negative) result as he did. Time and time again I had to step up to the plate to handle situations most adults couldn’t comprehend. I think people often forgot that I was still a kid, just like my brother. Though my experiences armed me with the knowledge of an adult, I was still just a teenage girl who was scared out of her mind.

As my disease progressed Tyler and I grew much closer. We have developed a new kind of bond, not only from the time we have sat in doctor’s office waiting rooms, but also from a mutual understanding we have for one another. Both of us know what it’s like to spend our days in a children’s hospital rather than spending our days in a classroom with our peers. We’ve given each other pep talks and tricks about how to make it through different procedures. We walk each other through this fight every day. We have stood side-by-side, supporting each other while nurses stab inch-long needles in our chests to access our ports. We hold hands as tears drip down our faces on the hardest of days. Beyond all these challenges, we have loved every moment we have gotten together, because we don’t know how much longer we may have of this special kind of love.

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