Ever since she was very young, my family and I knew Kaylee was different. Unfortunately, we didn’t realize that her uniqueness would be the cause of so much confusion and heartbreak in our lives, as well as hers.
Kaylee, my youngest sister, was diagnosed with Mitochondrial Encephalomyopathy, or “Mito” for short, in 2009. Mito is a rare neuromuscular disease. Mitochondria is the energy maker for every cell in our body. With Mito, these cells are weak and can’t produce enough energy. In return, muscles, including the heart, are greatly affected. Since the cells are weak, they’ll eventually burn out. When enough of them burn out, the systems begin to fail, which will ultimately lead to death.
Kaylee experiences struggles every day due to her disease. She can experience fatigue and muscle weakness and has a hard time breathing. Due to her extreme muscle weakness, she wears leg braces and uses a wheelchair when needed. Her brain is also affected. Her brain has involvement, which means she’s unable to retain short-term information for very long. A few years ago we discovered that Kaylee’s brain has started to die in several places, causing it to shrink. As this progresses, she’ll lose functions like walking, talking and eating.
Just when we thought things couldn’t get any worse, they did. Recently we found out that Kaylee is battling severe scoliosis, as well as a slipped vertebrae in her spine. To buy time, she’s wearing an incredibly uncomfortable body brace to keep things in place. In a few years, she must go through an extremely risky and life-threatening surgery, where recovery will be more than difficult.
We’ve been told that Kaylee would be lucky to live to 10 years old. She is now 8, and the thought of soon losing her breaks my heart and terrifies me. As a big sister, you feel as though it is your duty and first priority to protect and watch over your little siblings. But when it comes to a terminal illness, you just can’t win.
Not knowing is the worst part. I don’t know what’s going to happen, or when, or how bad it will be. All I I know is she is the strongest person I’ve ever met.
It kills me to see her in pain, especially when there isn’t a thing I can do about it. If I could, I’d trade places with her in a heartbeat. Sadly, I have no control over the outcome. So I intend to love and cherish her while she’s still here. I intend to be strong, hopeful and loving through this difficult journey. I’ll never forget when she looked at me and said “Sissy, this is our temporary home. We have to have fun while we’re here.”
Kaylee challenged me with having the most fun while I’m still here. I am willing to accept this challenge, and I really hope you chose to do the same.
