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“This is a new-born Sai with a new discovery. But I will continue to give courage to others”

You might think there is nothing new you can say about 34-year-old Dr Sai Kaustuv. National Award winner, disability advocate representing India at the United Nations, Global Motivational Speaker, Goodwill Ambassador, certified Happiness Coach… we would run out of space if we were to list all his well-known achievements.
 
But EGS contacted him, quite by coincidence, on the very day he and his family faced a stunning revelation. They had just received the results of a medical test that proved he did not have, as they had believed throughout his life, the rare genetic condition Osteogenesis Imperfecta (OI, also known as brittle bone disease)!
 
Kaustuv was the firstborn of Kaushik and Shila Dashgupta who lived in Siliguri, West Bengal. He fractured his hand at 3.5 months and by the time he was 18 months old he had sustained three more fractures. The Dashguptas decided to take Sai to Kolkata, which had better medical facilities. Without testing him thoroughly the doctors clinically diagnosed him with OI. In 2001 he fractured both his legs. A bungled plaster cast fused both his knees, and he could no longer walk.
 
He has been living with unrelenting pain for most of his life. As his health deteriorated, his parents moved to Puttaparthi where doctors at the speciality hospital promised relief. The family stayed there for 18 years but treatment proved unsuccessful. Kaushik, an experienced photojournalist, worked as a security officer at the museum in Puttaparthi instead of seeking a government job because he knew he would have to assist Shila, who quit her teaching profession, with her caregiving responsibilities. In 2004 Shila, who had studied numerology, added ‘Sai’ to Kaustuv’s name. “She said the name ‘Sai’ carries vibrations of true happiness,” Sai recalls. “She said you face so much difficulty in your life, let’s try adding ‘Sai’ to it and see – and voila! Here I am today.”
 
Shila also brought him a precious gift which became the cornerstone of his existence. “Music is my heart, my healing,” Sai says passionately. As a kid he loved dancing but he had multiple fractures during performances and doctors advised him to give up dancing for some other hobby. His parents encouraged him to learn music under the tutelage of Shila, herself a reputed classical singer. Sai won many awards, becoming a child prodigy of sorts. He might have participated in reality shows were it not for his physical limitations. “Music has brought solace to my soul through all the physical and mental torture I was made to go through,” he says. “Music is the password that connects me with divinity.”
 
Sai candidly talks about “the dark phase” of his life, from 2009-2015, when his physical and mental issues confined him to his bed. “During those six years I worked on finding the purpose of my life, and my spirituality made me strong,” he says. “I started talking about emotional wellbeing and focussing on becoming happy. We are responsible for our own lives. Miracles happen only when we create them.” Sai’s fighting spirit overcame his suffering. He got a diploma in computers, became a self-taught designer by operating the mouse with his one functioning finger, started doing work for an NGO, and began to get freelancing opportunities. Today he works as a senior graphic designer for an IT company.
 
“My wheelchair gave me a new life,” he says. “People say Sai inspires the world. But when I look back, I never see myself alone on the wheelchair, I see three people with me. My family are the living angels of my life, my lifeline, my motivation. All my national and international achievements would not have been possible if they had not sacrificed their lives for my well-being.” His younger brother Kushal (25) has done his MBA and works for an IT company “We are fortunate to have each other,” he says. “He helped me identify my strengths, to think out of the box. He is also a filmmaker and is very passionate about diversity and inclusion.” There is another thing this close-knit family shares besides abundant love. They all have doctorates! All four engaged in research: Sai on inclusion and happiness, Kushal on technology for social good, Shila on stress free life with spirituality, and Kaushik in the field of fine arts.
 
Every time he visited Bengaluru, Sai had been interacting with more and more persons with disabilities (PwDs) and learning more about OI. The family shifted to Bengaluru in 2022 and Sai went through various tests to try and find the root of his problems. When he discovered he didn’t have OI, anger was understandably his first reaction. “Shame on the medical professionals who forced me to live like this for the last 34 years,” he says. “There might have been some deficiency in my bones that caused the fractures.” His family too was shocked, but they dissuaded him from being vindictive. “You can file a case in court but will that cure you?” they asked.
 
Sai considers this a new beginning. “In 2025 I want to create more awareness on mis-diagnosed disabilities,” he says. “I will continue working on accessible air travel. I also want to work more with the authorities to make systems better and life more accessible for PwDs.”