Guest Voice: FA might slow me down, but my future is still bright

I’m Laxmi, and I have Friedreich’s ataxia (FA). I want to tell you about myself.

I was born and raised like a normal child. I used to dance and learned taekwondo. But gradually, my body became weaker, and I didn’t know what was causing it. I took vitamins, but nothing happened.

My handwriting started deteriorating in ninth grade and became slow. I started having negative thoughts about myself. I thought, “I am not good enough to study. I will not study or go out anymore.” I told my mom what I was thinking, and she explained that I should continue studying and move forward no matter what my writing was like, as long as it was legible. Education is the greatest power of man.

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Laxmi Singh credits her supportive parents as a key part of her accomplishments in life with Friedreich’s ataxia. (Courtesy of Laxmi Singh)

My mom boosted my courage. I kept studying, but because of my slow handwriting, I couldn’t get good grades on my exams. Before I began struggling with this, I had average test results, even after working hard, so I was very disappointed to see my grades go down. My parents never said anything that made me feel bad about it, though. Rather, they cheered me on a lot. And just like that, I completed 12th grade.

After graduation, the COVID-19 pandemic hit, and I developed a lot of problems with my feet. That’s when I was diagnosed with FA.

Before the pandemic, I could walk independently, but afterward, I needed support. Because this disease had made my body very weak, the negative thoughts returned. But my mother gave me the confidence to pursue a career and not think too much about it. With the support of my parents, I got a degree and started teaching.

Through these ups and downs, I learned that life is not easy, but supportive parents can keep you on a good path. If negative thoughts enter your life, I recommend making your mother your friend. Other friends may leave, but my parents never did.

What I’ve learned from life with FA

It’s been nine years since my symptoms started, but I am not in a wheelchair because of my parents’ support. And now I believe I am capable of working. I can write well, if slowly. I know FA is progressive, but I will not let it dominate me. I exercise at home. My two sisters have the same disease, and we all live happily because of Mom’s courage.

I’ve found that losing hope can cause my legs to stop working as well, so I try not to lose hope. I also try to keep walking to reduce the use of a wheelchair. My parents worry a lot about my sisters and me, though they don’t always show it.

People around me run, and I also feel like running, but my body does not allow me to. I won’t give up, though, even if I can’t walk like most people. Everyone has some talent or another, and those of us with FA should showcase ours. Let’s prove people wrong when they say we can’t do anything because we have FA.

I also try to have faith. I believe that whatever God does, he does it for good.

It doesn’t matter how slowly we go as long as we don’t stop. If someone helps us, no one should think that we are weak; simply acknowledge the other person’s kindness. There are some who will try to pull us down, speak ill of us, taunt us, or demotivate us. Ignore such people and demonstrate that we, too, can do a lot. A bright future awaits us.

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Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.