She is positive, full of life and raring to go. Latha Nair, founder of Amrithavarshini Charitable Society for Osteogenisis Imperfecta, a city-based voluntary organisation that offers a helping hand to disadvantaged people with Osteogenisis Imperfecta (OI) or brittle bone disease, has been taught well by her many “children” to be gung ho even when the odds are stacked against her.
“Even though they are in constant pain, given the fragility of their bones, which can break at the slightest impact, all the children affected with OI breathe positivity. Physically they may be confined to their wheelchairs or beds and cannot function without external support, but they all have quick minds which yearn to be acknowledged, to be set free from social stigmas. Their optimism for life just rubs off on you,” says Latha as we sit down for a chat at the organisation’s headquarters, a small tin-roof house at the very end of a housing colony in Vellayambalam, a day before World Disability Day, which was on Wednesday.
Eager to share their triumphs, she takes out three folders filled with profiles, disability certificates and photos of the 80 or so people with OI, from across the State, on its rolls. They range from a three-month-old to a 62-year-old, all of whom have various levels of disability.
“This chap here is Arshadul Ayoob P.M. He’s a student of class 10 and he loves studying. But he’s missed school a lot this year because he broke his femur. Young Vaishnav R. from Mahe is a huge cricket fan, while pretty Shamna, 12, from Kasaragod loves to jiggle, despite having over 70 per cent disability. Jisha who lives in Kannur draws, paints and makes her own dresses, while Athulya, who is 15, one of the first members of the organisation, is a whiz at painting and making bracelets.
“Nazeema is one of our most self-reliant members. She is about 28 years old and supports herself by running a wayside stall in front of her parent’s house in Kozhikode. Vimala, 48, from Panthirankavu in Kozhikode, who was, for a long while, afraid to step out of her home, writes lovely poems, paints and makes jewellery, all lying on her bed. Atul from Karunagapally, one of the new entrants, won top prizes in poetry and painting at the sub-district youth fete. Then there is enterprising 24-year-old Dhanya Ravi. She’s smart, self-taught, well-spoken and self-reliant. For her sheer grit, she has become a beacon of hope for anyone with OI. All that these people really need to flourish is a bit of understanding and support,” says Latha, who calls herself a “mentor, friend, philosopher, guide and counsellor” all rolled into one.
“I’m in constant touch with all of them on Facebook and Whatsapp. They know that they can come to me with anything,” she says.
Latha, who retired as a Superintendent from Matysafed, started the organisation in 2001, after she came to know the plight of Binu Devasia, an economically disadvantaged youth from Wayanad, who has OI.
“I had always wanted to do something meaningful with my life, especially after my daughter’s marriage. Until I met Binu, though, I had never even heard of the disease. The more I got to know about it, the more I realised that it was my destiny to help and I was determined make a difference in their lives,” recalls the lanky 58-year-old.
Her first successful campaign was fundraising for an operation for Binu that would help separate his intertwined legs. During the course of the campaign she met Dhanya, who is based in Bangalore, and together they have taken huge strides in improving the quality of life for people affected with OI by providing education, awareness, and support.
Amrithavarshini, registered as a charitable organisation in 2009, has a network of more than 400 people from across the world who volunteer their time, effort and money for the noble cause. “Sometime all you have to do is lend a sympathetic ear,” says Latha.
From 2009, taking up a suggestion from Athulya, Amrithavarshini started giving a small stipend every month for people with OI, beginning with Rs 200 for 28 individuals. Now, the amount has risen to Rs. 500 a month. The organisation also contributes towards hospital bills, which, Latha says, is quite often, given the propensity for injury for people with OI.
From 2010, it has been holding fun-filled, three-day camps a couple of times every year where they bring all the people with OI under their care together, along with their parents and caretakers.
“Parents must be educated about the disease. For example, if they have a child with OI, not many know that there is a 50 per cent chance that it will occur in the second child too. There are many families which have two or more kids with OI. They should know how important it is to provide emotional support to their children with OI,” says Latha.
This year, on May 6, they also celebrated Wishbone Day, an international community awareness effort for OI, with a gala programme that had actor Jagathy Sreekumar as the chief guest.
The organisation conducts handicraft classes on making jewellery, candles, umbrellas, cards, bookmarks and the like. Much of the raw material for the handicrafts is provided by the organisation itself. Members get paid for their efforts (for example, Rs. 50 for each umbrella they make) and the products are then sold, either online – through the Facebook page, Meghamalhar – or via exhibitions.
The members have a closed group on Facebook where they can share their thoughts and views.
“We aim to stimulate their creativity and make all our members self-reliant,” says Latha. Now that a few members like Dhanya and Abhirami have appeared on popular TV shows and radio programmes to spread the word, Latha’s next target is a feature in Satyamev Jayate . “OI needs a national platform,” she reasons.
