Editor's Note: In the run up to International Women’s Day on 8 March, we profile little known women in South India who have fought against all odds in their local communities to bring forth change and transformation. While some of these women stand out as shining examples of the power of determination, there are others who must battle misogyny and harassment. With this series, we highlight not just the trials and tribulations faced by women in all walks of life, but also how individual women are triumphing against caste, patriarchy and discrimination. In part seven of the series, read about how Latha Nair, a retired government employee gives legs to children with a rare disease.
When you know that a disease has no cure, the fight against it needs a rare grit and determination that is never easy to come by. 59-year-old Latha Nair has been the epitome of this strength to scores of children affected by a rare degenerative condition called Osteogenesis Imperfecta (OI), better known as the 'Brittle Bone Disease'.
OI is a genetic condition where bones have stunted growth leading to acute pain and fractures over the slightest of pressures. This disorder that affects one in 15,000 has no cure and often keeps the victim resigned to a wheel chair or a bed for the rest of his or her life.
For well over a decade and a half, Latha Nair, a retired government employee from Thiruvananthapuram has been relentlessly chasing a mission to change the way the world looks at OI children. It is a mission to alienate pain, suffering and enable the OI children stand on their legs of empowerment.
Amrithavarshini Charitable Society was the result of this effort and today the society is perhaps the only one of its kind in the country that caters to OI patients, helping them find a place in the society.
It was in the year 2000 that life changed for Nair. Having lost her husband and having married off her only daughter, Nair was at the crossroads of her life when she chanced up on 12-year-old Binu Devasya through a common friend.
The boy who was suffering from acute OI had a peculiar condition as his limbs intertwined rendering him unable to walk. “I just wanted to help him walk somehow. But I had no idea what to do. We collected some money to get him treated and after some prolonged treatments very painful years, he was somehow able to walk. This was the starting point of everything,’’ recollects Latha Nair.
Devasya today works at the front desk of a leading firm in the city and is also contributing a part of his hard earned money towards the cause of OI patients. “It is very difficult to even explain in words how aunty helped change my life. I would have never thought I could have even walked, forget about coming this far in life,’’ says a teary eyed Binu Devasya.
If meeting Devasya was the starting point, then soon came along Dhanya Ravi from Bangalore who had read about his plight in the media. Dhanya says she was first reluctant to reveal that she had OI when she first connected with Nair over the phone.
“I was shy and thought what she would think if I say I also had OI. So initially I kept quiet. But when I realised how she helped Binu, I also wanted to join in. Then Athulya also came along and that’s when aunty thought she should start a society for us all,’’ added Dhanya.
19-year-old Athulya Venugopal now administers a WhatsApp group called ‘Our World’ with over 40 members with OI. The group runs gaming sessions on general knowledge, English language, vocabulary and a special section called ‘Know Your Friend’ where every member gets to know the other.
“The biggest lesson I learned from Amrithavarshini is that I am not alone in this world with this disease. That gives all of us inspiration to live on and prove ourselves in the world,’’ Athulya Venugopal told Firstpost over phone.
Athulya who hails from Koylandi in North Kerala is completely bedridden. But she has now managed to clear her eleventh standard as a part of the state literacy mission programme supported by Amrithavarshini.
The beginnings of Amrithavarshini
The story of Amrithavarshini has been that of struggle. A struggle, to bring forth a group of children who had been confined to their homes not by choice but by fate. It is here that Latha Nair adds a new meaning to their heartbreaking existence.
She goes on to say that while taking care of the initial few children never made her think that she was into something that would stand for a lifetime, the steady flow of such OI kids made her realise the depth of what she had started.
“I started wondering initially why only such children were coming to me for help. In the beginning I had never reached out to children with such conditions. Now I feel it was my destiny and that I was perhaps chosen for this,’’ says Nair.
Nair says while there had been no dearth in helping hands as college students and professionals have always joined hands with her in conducting annual events and fairs for these kids, it’s the money that has always been an issue.
But somehow Nair has marched on undeterred with whatever savings she has had from her government job and the cash that donations would bring from good Samaritans.
“I had no idea how this would work. I still remember my father lending me Rs 1000 when I said I had to help Binu somehow. He then told me not to tell mother as she may get angry about me wasting money. See charity was never in the family. It’s just that it chose me and not the other way round,’’ adds Nair.
Amrithavarshini was registered as a charitable society in 2009 and held its first event, a get together of OI children, perhaps the first of its kind in the country in 2010 in Calicut.
It is here that 38 year old Vimala came into the picture. “My world was just through the tiny window at my bedside for 30 long years. It is at the get-together in 2010 that I realised that there were people like me in this world. I just cannot explain how my life changed after that,’’ says Vimala.
Empowerment is the motto
If Amrithavarshini opened a new world for people like Vimala, what it has done in life of 31-year-old Anoop Sahadevan is much more remarkable. Anoop had almost given up on life till Nair and the society came along. Hailing from Mavelikara in central Kerala, Anoop the eldest son in the family had his problems compounded when his father was also diagnosed with a brain tumour.
With Amrithavarshini’s support, Anoop finished his higher secondary as part of the Indira Gandhi Open University (Ignou) and his now pursuing an Information Technology Course. Not just that, Anoop has now set up a provision store with the help of Nair. The young man says that Nair has empowered people like him who despite their inability to stand on their physical legs are now self sufficient and seeing the world in an entirely different way.
Anoop has one more wish. “I am a huge fan of Prime Minister Narendra Modi and it’s my dream to meet him once. Now Latha aunty is trying for that,’’ he says with the enthusiasm of a child. In fact a letter sent by Amrithavarshini on Anoop’s behalf to the Prime Minister was recently acknowledged with a birthday post card singed by the prime minister for the young man.
The stories of such empowerment will perhaps call for a long list at Amrithavarshini. At Erumeli, just a few kilometers away from the famous Sabarimala Shrine lives Latheesa Ansari. From her wheel chair she has finished a Masters degree in Commerce and is now preparing for civil services examination in 2018.
“Through aunty I got a chance to meet a number of civil servants in the state. From then on I decided I also want to be a part of the service and aunty tells me I can do it,’’ says Lathisha.
Then there is Sumaya, who had been completely bedridden but takes motivational classes for school children and professionals. There is also Firoosa who runs a poultry farm along with her parents and not to forget Dhanya from Bangalore who has even appeared for Ted Talk.
All these children who would have otherwise been resigned to their beds, wheel chairs and fate owe it to the spark ignited by Latha Nair. No wonder what started as just a palliative care centre now has the motto “Where caring is empowering.’’
“I think at the end of the day that is what matters. There is nothing more you can give them than providing them a chance to express themselves, to show the world that they can indeed stand on their legs. That’s why we decided that empowerment should be our primary motive,’’ says Nair.
Amrithavarshini had been providing laptops and desktops to those who need them. In association with Ignou and state literacy mission, classes are organised to facilitate the completion of their schooling. Making jewellery, candles, umbrellas — the list of what these children do go on and on. Most of the products are sold at exhibitions and fairs enabling the children to make some pocket money.
It has been more than a decade since Amrithavarshini took its infant steps. What started at the drawing room of Latha Nair’s home has now reached a full fledged working space in the heart of Thiruvananthapuam city.
But Nair says there is still some distance to go before she can feel her mission is done. She now hopes to build an exclusive township or a ‘village’ for OI children somewhere in Thiruvananthapuram. She says the idea crossed her mind when the majority of parents expressed concerns on what would happen to their children once they are gone from this world. Nair now hopes to make a huge nest for all these OI children who need help.
“I feel there should be a space exclusively for them where they can share their problems and understand each other, a space that is completely OI friendly. We are looking out for some land and hopefully it will happen. We came this far from literally nothing. So am sure we will find a way for this too,’’ adds a confident Nair.
Updated Date: Mar 07, 2017 12:59 PM