Why Life With My Daughter With Mitochondrial Disease Is About the Journey

If I could describe my life as a mom of a child with a terminal diagnosis, it probably wouldn’t be what you’d expect. There are countless doctors’ appointments, therapies, hours on the phone ordering medical supplies and several trips to the pharmacy each week. I spend days researching each new symptom as it develops and endure many sleepless nights worrying about my daughter’s future, her health and her quality of life. But my days aren’t just filled with to-do lists and schedules. My days are also filled with hope.

In 2009, when my daughter, Sarah, was just over a year old, I heard the words that I could never have imagined: “She may never walk. She may never talk. She probably won’t live to be 2 years old.” These earth-shattering words have replayed in my head every day since then, driving my sense of urgency with every common childhood illness or delayed accomplishment of a developmental milestone. But in every situation, she has prevailed. She has defied expectations and she has overcome. And we’ve never lost hope.

Sarah has mitochondrial disease, which has threatened many times to take my daughter’s life. There is no cure, and there are currently no treatments that have proven to be effective. But our days aren’t filled with words like “terminal,” “fatal” or “tragic.” We focus on her strengths, which include her love of a strict routine and her blunt (and often funny) delivery of the truth as she sees it.

Sarah is a beautiful and happy 8-year-old who loves second grade and everyone she encounters there. Her favorite things are riding the school bus in her hot pink wheelchair, playing with her brother and sisters and eating Reese’s peanut butter cups. And although Sarah requires continuous oxygen and takes 19 medications a day just to maintain her baseline, she doesn’t ever complain. Never in eight years has she asked, “Why me?” or grumbled about the many blood draws, injections or surgeries she has endured. She just lives. She wakes up every morning as happy as can be, and she is always ready to meet every challenge head on. 

But the best part is that Sarah doesn’t see life as a challenge. She doesn’t see herself as disabled. She sees herself as the luckiest girl in the world, and she has said that many, many times. Over the years, she has stated, “I’m so lucky that I have my wheelchair — right, Mom?” or “I’m so lucky that I only had one seizure this time — right, Mom?” She even listened to our local radio station’s stories as they were raising money for St. Jude’s and said, “I’m so lucky that I don’t have cancer — right, Mom?” I didn’t have the heart to tell her that her disease is just as deadly. But honestly, I don’t think it would matter what battle she faces. Because Sarah is a fighter. She’s a warrior. And she is a winner.

She will continue to overcome her battle with mitochondrial disease, and she will continue to inspire those around her with her contagious joy and never-ending positivity. And one day, I pray that I can be as strong as my hero because she has shown me what strength and courage are all about: It’s about the journey. And Sarah’s journey is one of great magnitude. It’s a journey filled with hope.

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