My Story: 'As Years Are Passing By, My Hope For Normal Life Is Becoming Bleak'

I am a 33-year-old Chennai-based Scientist, lecturer, and motivational speaker. My motto has always been to leave my mark in the world, and after living a meaningful life for the last 30 years, I have impacted several lives around me. However, I have a more significant battle to fight, a fight for life, because I suffer from a crippling condition called Spinal Muscular Atrophy (SMA).

SMA is a rare motor neuron disease caused by a mutation in the survival motor neuron gene 1 (SMN1) resulting in muscle weakness and progressive loss of movement. It is caused by deterioration in the nerve cells (motor neurons) connecting the brain and spinal cord to the body's muscles. As the link between the nerves and muscles breaks down, the muscles used for crawling, walking, sitting up, moving the head, and even swallowing become progressively weaker and shrink (atrophy).

SMA has prevented me from walking or even standing on my own and has confined me to a wheelchair since I was 13 years old. Despite all odds and challenges posed by SMA, I have completed my PhD in Bioinformatics. In addition, I conduct lectures regularly and teach over 200 students in a year. My research work involves Structural Biology and Molecular Modeling. I have also co-authored a book titled "Systems Biology." I am carrying out a study on predicting the upcoming mutations in the Spike protein of SARS CoV2 using Machine Learning algorithms that can help tackle future COVID outbreaks effectively.

I am also an avid traveller; I have travelled across the country to picturesque places where the wheelchair was inaccessible, such as Ladakh and Rohtang Pass. All these achievements were possible only with the constant support and help of my family, a fantastic set of friends, and by the blessings of God.

But as years pass by, my condition worsens, and my hope of everyday life is becoming bleak. SMA is making me more vulnerable day by day, affecting my ability to eat, sleep, and even breathe. Despite terrible pain in my back and limbs every day, I keep fighting, wanting to make a difference to my students and the world. But without further treatment, my future is uncertain.

Every day proves to be a new challenge, and my only possible hope for a normal life is a newly invented drug called Risdiplam (Evrysdi). The price per bottle of this medicine is ₹6 lakhs and its dosage is dependent on the weight and age of a person. I have initiated crowdfunding and have been receiving help from many kind-hearted donors. Some of the donations I have received have made me think of someone's benevolence and kindness and give someone else a new lease of life.

If you too have an inspiring story to tell the world, send us your story at mystory@thelogicalindian.com