Meet Dhanya Ravi, A Victim Of Brittle Bone Disease Whose Unbroken Spirit Stands As An Inspiration To Many
- IWB Post
- September 7, 2019
“The universe took nine months to craft me, yet it wasn’t enough for my bones to be crafted to perfection,” shares Dhanya Ravi, fondly known as ‘India’s Glasswoman’ from Bengaluru who suffers from Osteogenesis imperfecta (OI), also known as brittle bone disease. OI is a group of genetic disorders that mainly affect the bones which result in bones that break easily.
Born in a family that eagerly awaited a girl child, Dhanya came into the world in 1989. Although overjoyed by her birth, Dhanya’s parents were always worried about the constant crying of their child, until they found that their 56-day-old daughter broke her thigh bone. Having being told by the doctors that Dhanya’s disease was incurable, her parents traveled across India in order to provide her the best medical care but their search bore no fruitful results.
“Like every parent, we wanted nothing less than the best for our daughter. But whenever we went, the doctor told us that her survival is a miracle. Many hospitals shut their doors. In times like these, the doctors are supposed to give counseling and help the patients and their family,” shared Ravi, Dhanya’s father.
However, despite the challenges faced by the family, Dhanya’s parents made sure that instead of restricting her moves, she was allowed to live her life just like any other normal person.
Describing her childhood, Dhanya shared with The Better India, “I was around five years old when I understood what is OI. In very simple terms I was told that my bones would break for no reason. I was mentally prepared to lead to a different childhood but every time a bone would break I would be clouded by gloominess. With persistent support from my parents and brother Rajesh, I’m still finding possibilities to overcome my challenges.”
Even though Dhanya received full support from her family, the society and their mindsets always reminded her that she was a different child. While she was confined to a wheelchair that was her only support system to take her around, people would often inquire about the reason behind her appearance and Dhanya explained her condition to them with utmost patience. “Till date, people look at me as if I am an alien. Because there is a lack of awareness about rare diseases and sensitivity around the subject, people stare, and some even pass comments. My parents are bothered by it, but I tell them their daughter is a celebrity,” shared Dhanya.
Hospital visits have always been a constant part of Dhanya’s life. “There are more fractures in my body than wounds. Due to dental and eye deformities or respiratory issues, I became very familiar with hospitals at a very young age, and soon it became my second home,” she explains.
As once in two weeks Dhanya’s bone would break, schools in Bengaluru refused to admit her. But as optimistic she is about everything in life, Dhanya chose to complete her high school by studying at home with help from her neighbour, Victoria, who she gives the entire credit to. “Victoria aunty is the epitome of selfless love. She didn’t even take a penny for tutoring and mentoring me. More than textbook chapters, I learned life lessons from her.”
With Victoria’s constant support, Dhanya cleared a preparatory course from Indira Gandhi National Open University (IGNOU), along with an Online Novel Writing certificate course. While every part of Dhanya’s body has experienced excruciating pain since the time of birth, a spirited Dhanya shared, “Thank god my tongue doesn’t have a bone.”
A lover of classical music, an avid reader, and an active internet user, Dhanya’s interest have helped her gain a plethora of knowledge of different fields. With her personal blog ‘Dhanya Ravi- Where words speak’, she pens her personal experiences and quotes to help people like her overcome challenges that they face. Not only this, she also works as a freelance columnist and web content writer.
Dhanya has not just been inspiring people to overcome their challenges, but she has also been instrumental in helping another victim of OI- Binu. By reaching out to her readers and friends, Dhanya raised funds for his surgery, and now he works as an assistant in a Kochi hospital.
With this incident, Dhanya has made it her mission to create awareness and sensitise people about rare diseases. “I want to educate people about inclusion and acceptance and empower people with disabilities. Even now there are stigmas in the society and parents are often ashamed to take their child with deformities out. Many parents are not fully informed about the way they should handle such kids.”
For the last couple of years, Dhanya has been associated with several NGOs that work towards the same cause and she has also been creating awareness by speaking at events like marathons and TEDx Talks to deliver motivational talks in educational institutes.
H/T: The Better India