Indian Osteogenesis Imperfecta Foundation (IOIF) visited Dhanya Ravi at her Jeevan Bima Nagar home as part of the foundation’s endeavor to gather stories of people winning over Osteogenesis Imperfecta (OI) and spread awareness about it in the community.
Dhanya was born with a femur bone fracture. The swelling took few days to appear. The fracture was diagnosed but OI was not. Her constant and unending cries owing to the pain would not subside and this caused her parents much anxiety. At that time, due to the lack of technologies and inexperience of doctors regarding OI, it was challenging to diagnose it. It would take another week and multiple consultations with doctors to figure out that Dhanya was born with a rare disease – Osteogenesis Imperfecta. “From then on”, she says, “it was a journey to many doctors for her parents to understand more about the condition and to investigate about future steps”. It was finally at Christian Medical College (CMC), Vellore that they met a doctor who not only explained to them about the condition but also encouraged them to accept the truth and motivated them to do the best as parents for Dhanya. One more thing that differentiated this doctor from the rest was his empathy and sense of connectedness with Dhanya’s parents during their extremely emotionally vulnerable and psychologically troublesome time. It was the guidance and counselling they had received from the doctor that helped them move forward, embrace the situation and prepare selves for the challenges to come. Dhanya emphasizes that every doctor must be trained to handle such situation(s) so that the parents find it less difficult to accept it and gain a perspective on nurturing the child.
Since OI causes multiple and recurrent fractures, Dhanya’s parents had to take her to hospital quite often. During one such incidence, while coming back from the hospital, Dhanya had another fracture. After that Dhanya’s father was advised by doctors to restrict the travel and movement. Eventually, Dhanya’s doting father also learnt how to fix a fracture. Rodding as an option that time in Dhanya’s case was slightly unclear. There was lots of confusion and lack of clarity. She says, “Either the doctors were not clear, or my parents did not know or my health was not allowing the surgery”. In times like these, it is not easy to arrive at a decision regarding surgery or operation. Lack of knowledge and research in this domain can be held accountable. 27 years down the line, however, times have changed states Dhanya. She elaborates:
“Nowadays there is relatively a greater awareness about rodding, doctors are more confident because technology has evolved considerably. Rodding is increasingly practiced in infants now.”
At this point she emphasizes that she is not regretful but concerned about the way in which the diagnosis of OI is handled both by doctors and the parents. She says that research ought to be done by both the parties after diagnosis as to how to address it. Quite emphatically she also asserts that the upbringing of the child ought to be focused on making him/her empowered and independent while maintaining a careful balance between care and excessive care.
Although it must have been difficult for Dhanya to come to terms with her own condition growing up, she declares that embracing OI was not tough. She had surrendered and accepted it not with regrets but immense gratitude. Dhanya could not receive formal education for schools were skeptical about her health and safety during the premises. However, there was one humble woman, Victoria, who would home-school Dhanya for ten years, absolutely free of cost. For those who have not heard Dhanya, she speaks an impeccable English. (By writing this we do not imply that English speaking ability proves education or an inability hints at the lack of it) Dhanya attributes her fluency and hold over English language entirely to Victoria.
“But more importantly”, she says, “that it was parents’ support and optimism about life that has influenced me the most”.
Victoria taught Dhanya to read, write and learn and one of Dhanya’s friends shared curriculum books with her. This is how learning blossomed for her. As Dhanya grew up, computer and books became her friends. No wonder Dhanya is a wonderful writer, does content writing as a freelancer. She also maintains a blog and an online space on YourQuote titled, “Matter of Thought”. It was blogging which led her to explore more about the world of internet before venturing into Data Entry work.
She says that even though the money was less but it was not about money, it was about the feeling of being engaged and contributing towards the society in her own unique ways.
For a long time, Dhanya was also associated with Amrithavarshini Charitable Society for Osteogenesis Imperfecta after coming in contact with Latha Nair, the founder of the organization. The story of this connection goes back to Dhanya’s encounter with Binu Devassya, a young kid with OI, who needed money for his medical surgery. She had read about Binu in the newspaper. The news was advertised by Binu’s supporters. Dhanya introduced her group of networking friends with whom she was associated during that time to Latha Nair with the intention to help Binu. This act of self-less care and empathy led Dhanya and Latha to cross each other’s paths. Mysterious that Dhanya is, all this while, it was not known to Latha that Dhanya also had OI. She says,
“Amrithavarshini is like a learning institution for me where I was able to connect with people of a similar health condition, Beyond a positive socialisation it helped me learn from each others’ experiences.”
This is just one of the many acts by Dhanya from which we can learn the meaning of true selfless service. With Amrithavarshini, Dhanya began creating awareness about OI through public speaking, news shows and TV interviews. Currently she is active in mobilization and sensitization for OI and rare diseases individually and in collaboration with different non-profit organizations (NGOs). In her words:
“Creating awareness about OI and rare diseases, that is my goal and vision in life”.
She dreams of an inclusive India, “being together” she says. Talking of creating awareness about OI, Dhanya has also been a speaker at TED, interviewed by International newspapers and covered in magazines. Her purpose has brought her to meet Late. Shri A.P.J Abdul Kalam about whom she speaks with genuine respectful admiration. Recently, she also met Sadhguru Jaggi Vasudev at IIM Bangalore and requested him to spread awareness about OI and rare diseases. The video conversation of Youthandtruth is published on youtube by iWeedastic at https://youtu.be/g2cKqVkKQIY. Dhanya has also mentioned about this meeting on her blog here.
On a serious note Dhanya mentions that since OI is a genetic disorder, it is critical that the couple get tested before planning childbirth and that the mother is also tested mandatorily in the early phases of pregnancy. (We want to inform our readers that genetic examination is affordable.) She also states that over the period of time she has learnt to handle fractures herself and the accompanying pain without being overly dependent on painkillers. Obviously this means that her mental strength has soared high.
We asked Dhanya about her message to the world, particularly for youth, in such tumultuous times where stress and depression is becoming so pervasive. She articulated it very beautifully and said,
“My bones break but they do not break me. Life is all about challenges, struggles, cries but never forget your purpose. My times can be bad, or good or even horrible but I never let the purpose of my life go out of sight. There are a million things one can do, everyone has a unique contribution to make to the society. Life is such a precious gift, never give up on life. Sometimes just hug yourself and say, ‘Its okay’.”
This statement is immensely powerful and a good reminder of the fortitude that all of us possess naturally due to the Grace of Lord. Lastly, Dhanya concluded the interview by saying:
“I do not wish another generation to be born with a condition like this, that is the whole point behind my being. My purpose is to create awareness and traction about OI so that it can be prevented and appropriately handled. My vision is that if a child is born with rare disease, practical steps are taken to ensure that life is smooth for both the child and the parents. In this respect, doctors have a huge role to play. They have to become physicians, counsellors and advisors at the same time to provide courage and support to parents on diagnosis of the disorder.”
The foundation immensely thanks Dhanya Ravi for taking out time to talk to us and share her phenomenal life with us. Dhanya Ravi is a force to reckon with. She is not only a flag-bearer of the movement to create awareness about OI and rare diseases but also a light that guides us all to live a life of selfless service.
The foundation also deeply praises Dhanya Ravi’s parents for forever holding her hand, setting an example for the entire world and making all of us believe that:
“Happiness can be found even in the darkest of times, if one only remembers to turn on the light.”― Harry Potter and the Prisoner of Azkaban”
Acknowledging Dhanya’s relentless efforts to create traction about OI and rare diseases, the Ministry of Social Justice and Empowerment, Government of India has conferred National Award for Empowerment of People with Disability – under the category ‘Role Model on Dhanya Ravi very recently. The foundation congratulates Dhanya and her family and wishes her all the best for her future endeavors.
(Interviewed by Yesoda Bhargava)