What a small world we live in! Recently I had the honor of talking with the co-founder of Billy's Footwear, and while looking at other nonprofits they support, we came across a nonprofit based in South Dakota called Rare by Design. I sent an inquiry to learn about more of what they do since we both focus on serving the "rare" population. I quickly learned that I had just met a firecracker who was beating all the odds, breaking down barriers, and has quite the story to tell. Please read about the beautiful, talented, and highly accomplished Kendra Gottsleben and her personal journey of living with "rare". -Nicole Schmidt, Project 12-04
On November 3, 1984, an excited set of parents finally got to experience the moment they eagerly anticipated: the birth of their daughter. I was born healthy and strong with no signs of future health challenges. Like any new parents, mine saw endless potential from the first day we met. Little did my parents know, only a few short months later, we’d begin a lifelong journey of great obstacles and challenges.
When I was six-months old, my mother noticed a bump in the middle of my back, later diagnosed as kyphosis, an abnormal curvature of the spine. As a teacher, she knew this was not typical and she became very concerned about my physical development. Months later, still as a baby, I had corrective surgery. As I learned to walk, my mother noticed my bent knees and short, curved fingers. An orthopedist told her not to worry, that this was typical for some children. However, because of her persistence, we were finally referred to a geneticist.
Preceding the official diagnosis from the genetic testing, my parents were told there was high likelihood that I would regress intellectually and probably die before reaching the age of ten. The words were unimaginable and heartbreaking for them, but my parents refused to believe that prognosis and continued optimistically searching for answers.
An entire month passed before my parents learned I had been misdiagnosed and received my official diagnosis. At the age of four, I was diagnosed with a rare enzyme disorder called Mucopolysaccharidosis Type VI (MPS VI). One in 250,000 people are diagnosed with this condition. My body is missing the enzyme that is needed to cleanse my cells, which causes a buildup of a gluey-like substance that affects my connective tissue and other vital organs. The new diagnosis provided better odds to live a somewhat healthy life. Additionally, I wouldn’t revert intellectually and there was also no age-related death sentence.
Thirty-three years later, I refuse to be defined by my MPS and I define my life by my positive outlook and success in overcoming obstacles! I successfully graduated from college with a double major in sociology and psychology. Currently, I work as the marketing communication specialist at the Center for Disabilities within the University of South Dakota Sanford School of Medicine. I am also an author, spokesperson on living a life with a rare disease/disability and the founder and executive director of the nonprofit organization, Rare by Design. My career blends the two worlds that I grew up in: medicine and education. I enjoy being a resource of support for families and children who have severe or life-threatening illnesses or disabilities.
I live my life by the motto, “When Life Hands You Lemons…Make Lemonade.” This saying reminds me to turn obstacles in my life into positives. In fact, I have put my own special twist on this common phrase, “When Life Hands You Lemons…Turn Right Around and Squeeze Those Lemons to Make the BEST Lemonade Possible.” My belief in this motto encouraged me to accomplish my dreams of writing books. The three books I have written are, Live Laugh Lemonade: A Journey of Choosing to Beat the Odds, Kendra’s Lemonade and Kendra’s Perfect Dance Routine.
It’s my hope that the books will help others realize that who we are or what we look like shouldn't stop us from reaching our goals. MPS has presented many obstacles for me such as poor vision, constrictive airway, an inability to walk long distances…to name only a few. However, I’m determined to not let a diagnosis limit my achievements and stifle my dreams. Every experience, good or bad, is a learning opportunity to grow from. We need to remember life is a constant learning cycle.
As I continually strive to learn from my experiences, I also enjoy the opportunity to learn from other’s experiences. Particularly, I feel blessed when I have the chance to meet with others to share my positive outlook on life. Everyone’s life is tough at some point or another; that’s a fact. It doesn’t matter how different each of our lives are. These obstacles are what make us who we are. Limits are only barriers to break down; we must not be defined by our limitations.
I always try approaching my struggles with a positive outlook. At a young age, I was taught that I cannot choose my obstacles, but I can choose my attitude, which determines my success and happiness in life. It’s also important to me that others find their self-confidence in the face of their challenges. The truth is that with hard work and a positive attitude our potential is endless. Life’s greatest successes are worth diligent work and never giving up.
The lemons in my life have led me to be a dreamer of big dreams and an achiever of even bigger dreams! I choose to make lemonade every day. Next time a challenge comes your way ask yourself, "If the obstacles had never occurred in your life, where would you be today?", and start squeezing!
By Kendra Gottsleben
Rare by Design is a nonprofit organization that works towards creating awareness, inclusion and representation for individuals with a rare disease and disability. We focus on living life positively to support our community and their families. Founded on the belief that everyone should celebrate the rare that makes us unique and extraordinary. Our events strive to foster community engagement for individuals with rare diseases and disabilities. Supporting Rare by Design means you are giving back to local and national nonprofits that assist research, human growth, self-advocacy and empowerment. Visit https://www.rarebydesign.org to read more about Kendra's amazing nonprofit.