Broken bones, unbroken spirit: Dhanya Ravi’s incredible story and her quest to raise awareness about rare diseases

Twenty-nine-year-old Dhanya Ravi suffers from osteogenesis imperfecta (OI), commonly known as brittle bone disease, a rare genetic disorder that is present from birth.

When Dhanya was born in Bengaluru in November 1989, her parents were unable to figure why she was crying all the time. It was a normal delivery, she was the much “wanted” girl in the family, and there was a lot of happiness surrounding her birth.

The 56th day - naming ceremony, normally celebrated in Malayalee families after the birth of a baby, came and went. She continued crying and many doctors were unable to diagnose the reason. Finally, one doctor realised the baby suffered from osteogenesis imperfecta. The verdict was clear - Dhanya would never be able to lead a “normal” life.

Since the life-changing diagnosis, Dhanya has suffered more fractures than she has bones in her body. Even a simple act of sneezing or coughing would trigger a fracture.

A "fractured" childhood

“Growing up, I spent a lot of time in and out of hospitals as OI causes multiple, recurrent fractures. Once, while coming back home from the hospital after recovering from one, I had another fracture,” she explains.

Dhanya could not take advantage of rodding, an option that is available today for OI patients, as there was a lot of confusion and a lack of clarity among the doctors and her parents due to the lack of awareness.

Her parents continued taking her to different doctors all over the country, hoping to find a cure. Ultimately, after a series of counselling sessions at the Christian Medical College, Vellore, they accepted the situation and realised care was now of utmost importance.

“Mainstream schooling was not an option for me because of my precarious health. Fortunately, my neighbour Victoria aunty took it upon herself to homeschool me for an hour every day. She did this voluntarily out of her love for me. She taught me till high school and I later completed a preparatory course from Indira Gandhi National Open University, and Online Novel Writing certificate course from The Climber Knowledge and Careers Private Limited,” she adds.

The hospital visits continued unabated throughout her teenage years, but Dhanya never let despondency rear its ugly head. “Though I had to be held like a three-year-old, and nursed by my mother, I still remained positive about life. The turning point came when I was introduced to the internet and life took a 360-degree turn.”

Finding purpose online

Dhanya joined many chat forums that focussed on music and this helped her find many friends. She came across news about a boy Binu who suffered from the same condition as her and required funds for his surgery. This news galvanised her into action, as she felt she really needed to do something that would give her life a higher sense of purpose.

“I reached out to Latha Nair, a philanthropist, and Binu’s caretaker, wanting to help. I requested my friends online to contribute to his surgery, and within no time, we had started a strong community that came forward to help,” she recalls.

Until his surgery, Binu could only crawl, but he could now move with the help of a walker. Today, he works as an assistant in a health centre in Kochi.

This experience of being able to connect those who could help with those in need helped Dhanya identify what she wanted to do in the future. When Latha Nair started the Amritavarshini Charitable Society, India’s first NGO for people affected by osteogenesis imperfecta, she played a major role in creating awareness about the disease through public speaking, news shows, and TV interviews.

She took part in popular Malayalam television programmes like Ningalkkum Akam Kodeeswaran, Idea Star Singer-6, and Ashwamedham, and with the support of organisations  like ORDI and One Step At A Time, spread awareness about the disease, as well as disability rights.

Awareness and apathy

“I advocate for mandatory genetic testing of all pregnant women and also for early diagnosis to facilitate rehabilitation. Apart from medicines and therapy, family counselling is also very important. If hospitals have a cell for this purpose, it will help families face rare diseases with more information and apathy,” she says.

For her efforts, Dhanya was conferred the National Award 2018 in the Role Model category by the Department of Empowerment of Persons with Disabilities India, and was also honored with the ‘Brave Bangle Award 2012’ and ‘Annual Inspired Indian Foundation (IIF) Award 2014’ for devoting her heart and soul towards alleviating the pain of people with disability.

Despite being confined to a wheelchair and the danger of injuries, Dhanya feels confident enough to travel. She is currently in the US visiting her brother and his family, and coordinating with various NGOs in the country as well. She also works as a freelance content writer, digital marketer, and columnist for both online and offline media.

“Right now, I am at a place where I want people to know how important life is and how they must make the best use of their struggles. I look forward to a generation free of rare diseases and to continue advocating for early testing and diagnosis,” Dhanya says.

Also read: Rising above disability: The inspiring stories of 8 differently abled entrepreneurs

7 unsung heroes who battled disability to achieve their dreams