Through the Thorns, To the Stars.

Hi, my name is Sanchi Khera. I am 20 years old, and I live with Spinal Muscular Atrophy Type 2, along with severe kyphoscoliosis and restrictive lung disease.

SMA is a rare genetic condition caused by the absence of the SMN1 gene, which prevents the body from producing motor neurons; the cells responsible for muscle movement. Because of this, my muscles have gradually weakened since infancy. SMA changed the course of my life before I could even learn how to speak.

I am a full-time wheelchair user and completely bed-bound otherwise. Over the years, my condition has progressed rapidly. Today, I can only use one index finger and both thumbs. That is the full extent of my motor ability. I have survived multiple traumatic ICU admissions, months-long hospital stays, and 7 to 8 bronchoscopies. My lungs function at only about 35%, and for most of my life, I have lived on borrowed air.

Yet, despite everything, I never stopped dreaming.

When schools refused to admit me because of my disability, I continued my education from home and successfully cleared my GED. Along the way, I became a published author, contributed to over ten anthologies, and compiled my own book, Souls Intertwined. That work led to my writing being featured in the Times of India, where my book was recognised among the Top 5 Books of the Month.

My dream has always been simple; to receive a good education and build a meaningful future. Today, I am pursuing my Bachelor’s degree in English Literature as a second-year student. However, due to my health, I was forced to choose online education over attending college in person: which was my biggest dream.

Now, my future is at serious risk.

I am rapidly losing what little mobility I have left because my family cannot afford Risdiplam (Evrysdi); the only oral disease-modifying therapy available for adults with SMA Type 2. This medication does not cure SMA, but it can slow or stabilize the progression of the disease; Providing upper-body strength that could preserve my hands and lungs.

One bottle of Risdiplam costs ₹6 lakh. I have been prescribed 5 ml daily, which means I require 2.5 bottles every month; an expense of ₹15 lakh per month, or approximately ₹72 lakh annually, for the rest of my life. Stopping this medication once started can be life-threatening.

There is currently no cure for SMA. Risdiplam is my only chance to preserve my remaining strength, protect my breathing, and give me time.

Time to continue my education, to write, to contribute, and to live with dignity.

My family is middle-class, with a single source of income. This cost is far beyond what we can afford on our own.

That is why today, I am asking for your help.

Every contribution; no matter how small, brings me closer to stability, safety, and the possibility of a future where my disease does not define my limits. With your support, I may even be able to pursue my master’s degree and continue working toward my dream of becoming a best-selling author and a world counselor.

I, too, deserve the chance to live an educated, independent, and meaningful life. After fighting for support my entire life, my greatest hope is to build a future where my needs are met without compromise. I humbly ask you to lend a helping hand and to stand with me, as I thread through the thorns, to the stars.