Sai Kaustuv Dasgupta was three and a half months old when he had his first fracture. By now, 32 years on, he has had over 50 fractures. Moreover, he can only move one part of his body effectively: his left index finger, which he uses to control his wheelchair.
Sai has 90 percent disability because of brittle bone disease, a rare inherited disorder that causes bones to break easily.
Despite such odds, Dasgupta – who is from Siliguri, West Bengal, and currently resides in Bangalore along with his parents and younger brother – has managed to establish himself as a graphic designer, a happiness coach and a motivational speaker.
What is brittle bone disease?
Osteogenesis imperfecta or brittle bone disease is a genetic disease caused by a defect in the gene that produces collagen – the protein which forms and strengthens the bones.
“My mother was holding me and heard a snapping sound from my right arm,” says Sai, recounting his first encounter with the condition. “She took me to the doctor who informed them that I had sustained a fracture. By the age of one, I had three more fractures.”
Brittle bone disease: As delicate as glass
“I’m like a glass. Any part of my body can get fractured at any time,” says Sai, who was sent to a regular school to ensure he felt included. But he always knew that he was special and could not play outside like the others.
“I was good at studies and came first when I was in class three. I was excited to celebrate it with my family and we planned to go for dinner. One of my classmates shook my hand to congratulate me which resulted in a major fracture. Instead of a restaurant, I landed in a hospital,” he says.
Due to his treatment, they had to frequently change schools and cities. “My mother was a music teacher and to look after me, she came along with me and joined all the schools that I studied in,” says Sai.
Not formidable enough to break his heart
When he was a child, Sai loved dancing. But due to his condition, doctors asked him to quit.
That didn’t stop him from exploring other interests. Inspired by his mother, he took to singing and composing music despite a severe hearing impairment and the need to use hearing aids. “The disease broke my body, but not my heart,” he says with a bright smile. “I have composed over 300 songs. Artistes like AR Rahman and Shreya Ghoshal have shared my songs and have appreciated my singing.”
“I always had fractures and was in pain throughout my life. I sang every time I was in pain because I believe that music is an art that has the power to heal your pain and helps with your emotional well-being,” says Sai, who also regularly takes part in marathons in his wheelchair. According to him, people always talk about physical and mental wellbeing and often neglect emotional wellbeing. He believes that emotional wellbeing is equally important and music has played a huge role in this aspect.
One finger is not a limitation
Due to the criticality of the disease, Sai was bedridden for over six years and after going through more than 50 fractures, his body and his muscles turned immobile. “This was a dark phase of my life. I was searching for something to make it colourful again when graphic design came into my life. I had never thought of becoming a graphic designer as my hands weren’t functional,” says Sai.
“I decided to break the barrier and show the world that one finger is not a limitation when your creativity is unlimited.” Sai now works with an MNC and creates designs for international clients.
“Happiness is something that comes to you when you give it to people,” he says. “After going through depression and stress, I realised the need to help people to seek the happiness inside them. So, I started my journey as a happiness coach.”
His biggest support system is his family, who has always told him that he is special and never seen his disability as limiting. “I’ve never heard a ‘no’ from them. They have encouraged me in everything that I wanted to do and helped me achieve it,” says Sai.