What is your name?
My name is Kanhaiya Lal Kumawat.
How old are you?
I am 32 years old.
Where do you call home?
I call a beautiful small village in Rajasthan, India, my home. I live there with my parents and grandmother, and it will always be my sweet home.
How long has it been since you experienced the first symptoms of FA? What is the situation now?
I first started experiencing symptoms of Friedreich’s Ataxia (FA) when I was around 15 years old. It took about four years to receive a proper diagnosis. As the condition progressed, I began using a wheelchair full-time at the age of 24. Today, I continue to face challenges, but I focus on living a meaningful and positive life.
Are there any others with FA in your family?
No, I am the only person in my family diagnosed with FA.
How has FA affected your friendships and relationships? Were people supportive?
FA has taught me a lot about relationships. Some friends and relatives became incredibly supportive and stood by me during difficult times. At the same time, I lost touch with some people because of my condition. Overall, the experience helped me understand who truly cares and supports me.
What is your education? What is a current goal you have with your education? How will FA add to your future career?
I completed a three-year Diploma in Electronics and Telecommunication Engineering. After being diagnosed with FA, I transitioned my career toward digital marketing and freelancing. I learned through books, online courses, and earned a certificate from Google Garage. My current goal is to continue building my career in digital marketing — helping people and businesses promote their goods and services online. In the future, I hope to write a book about my journey and experiences living with FA.
Who do you live with?
I live with my parents and my grandmother.
What’s a typical day for you?
A typical day for me includes reading books, taking online courses, listening to music, and spending time with my family. I enjoy learning new things and continuing my personal growth from home.
How long have you known you are living with FA? When and how were you diagnosed?
I have been living with FA for about 13 years. I started noticing symptoms when I was in the 9th grade. At first, we visited general doctors, but my condition continued to progress. During the third year of my engineering diploma, someone suggested that I see a neurologist. After multiple tests, I was finally diagnosed with Friedreich’s Ataxia. I began using a walker at the age of 26 and now use a wheelchair full-time.
What do you like to do to stay active, and what type of exercises work for you to stay strong?
I attend physiotherapy once a week and do light stretching exercises at home. I also practice breathing exercises daily, which help me stay active and maintain my overall well-being.
Do you have any hobbies or special interests?
I enjoy reading books, listening to music, and watching movies. I am also passionate about learning, personal development, psychology, spirituality, and digital marketing.
FA life is hard and frustrating. It’s okay to get sad and depressed — just don’t stay in that mindset. When FA gets you down, what do you think or do to feel better?
When I feel discouraged, I read inspirational books, watch uplifting movies, and talk with my parents, who are my greatest source of support and inspiration. I also speak regularly with my older sisters, whose encouragement helps me stay positive.
What is one way living with FA has positively affected your life?
Living with FA has strengthened my bond with my family. It has helped me appreciate relationships more deeply and build meaningful connections with my family and nephews.
What is a favorite motivational quote of yours?
“Think about what is truly important and make it your priority.” — Sandeep Maheshwari
What is a piece of advice that someone with FA has given you that encourages and inspires you?
“FA is not the end of the road; it is only an obstacle. We all want to be independent, but it is okay to rely on others sometimes, and it is okay not to be okay.”
What is the best advice YOU could give to a person who has been newly diagnosed with FA?
Be strong and keep working on yourself. Make your health, personal growth, and relationships with family and friends your highest priorities. Focus on what you can control and take one day at a time.
What is the first thing you want to do when a cure or treatment for FA is found?
I would love to visit the Maldives, enjoy the beautiful beaches, and have breakfast in a swimming pool while celebrating a new chapter of life.
What is a good trick to make daily life easier?
I have learned to clearly define what is most important to me and focus my energy on those priorities. I have also learned that asking for help is a strength, not a weakness.
“I have FA, but FA doesn’t have me.” What does this statement mean to you?
To me, this means that FA does not define who I am. Although I had to leave my engineering career because of FA, I discovered a new path in digital marketing. Today, I can help businesses promote their products and services online from my home. FA changed my path, but it did not take away my ability to learn, grow, and contribute.
How do you live your life in the face of adversity?
I never hesitate to ask for help when I need it. At the same time, I have strong faith in God and trust that every challenge has a purpose. This belief helps me move forward with hope and determination.
Tell us a little more about you.
I live in a peaceful village in Rajasthan and strongly believe in “simple living and high thinking.” When I was diagnosed with FA, I knew very little about the condition. At that time, information about FA was limited, and I often felt confused and discouraged.
To better understand my situation and improve my mindset, I started reading books on psychology, self-development, and spirituality. I also watched educational videos, listened to podcasts, and completed online courses.
Although I earned a diploma in engineering, FA led me to change my career path and explore digital marketing. Over time, I fell in love with the field because it allows me to work, learn, and create opportunities from home.
Currently, I am undergoing physiotherapy to manage back pain and maintain my mobility. In my free time, I enjoy listening to music, watching movies, and reading books. One of my dreams is to write a book about my journey with Friedreich’s Ataxia so that I can inspire and support others facing similar challenges.
Above all, I feel truly blessed to have a loving and supportive family that stands beside me every day.
Interviewed and Edited by
Sam Dupre