Brittle but not broken

The story of Sai

At three and a half months old, my first fracture appeared. Within a year, I had fractured three more bones. The doctor after having a series of tests explained to my parents that I suffered from Osteogenesis Imperfecta and that they will need to prepare me for life in a wheelchair because my body was not creating the collagen or protein required to develop my bones.

Osteogenesis Imperfecta (OI), more commonly known as brittle bone disease, affects approximately 1 in 15,000 people. A genetic disorder whose impact on the bones can range from mild to severe and is caused by defective genes which compromise how the body makes collagen.

It was not easy for a hyperactive child like me who loved dancing and singing, and I often blamed my falls and broken bones on my clumsiness. I saw that the other children were healthier, so I just thought I needed to pay more attention to my step – until at age ten when I fell and broke both my legs.

Globally, one in every 20,000 to 50,000 is reported to suffer from OI and I am one such fellow to suffer from OI. I refused to see my disability as a limitation and chose to treat this as a life’s challenge, something to conquer. When I was young, it was difficult for me to understand that I am not normal but a special child. You don’t know what to feel. It is not an easy feeling to face 3-4 fractures a year. Those situations started becoming normal for me when I used to get fractures randomly. I had numerous fractures to date, but after 50, I have stopped counting as I was feeling my bones are brittle but I will not allow the disease to break my heart.

Having a very rare Brittle Bone Disease and going through more than 50 fractures, I became the Wheelchair Warrior of India today and motivating millions through my positivity and smile. I suffer from severe hearing impairment too and am confined to an electric wheelchair 24×7. By profession, I am an International Graphic Designer (designing with one finger of my left hand), a Global Motivational (TEDx) Speaker, and India’s first disabled Certified Happiness Coach. By passion, I’m a singer, composer, entrepreneur, author, Guinness, Limca, India, 16+ World Record holder, Inclusion & Diversity Champion, Goodwill Ambassador, and founder of a virtual platform called Happiness Unlimited.

I prefer to live a successful and complete life rather than taking a sympathetic greeting from all around. Yes, I am brittle but not broken!