CHENNAI: What caught our attention during Sangarsh, a fund raiser concert hosted by the Rotaract Club of College of Engineering, Guindy (CEG), was that a part of the auditorium at The Music Academy was filled with children affected by muscular dystrophy (MD). As they made their entry, a few in wheelchairs and others being carried by their parents, City Express identified Louis Stanislas and his wife G Ranganayaki, who founded the Muscular Dystrophy Foundation of India (MDFI) in 2010 with it base in Madurai. It was in 1998 they found out that their only son had MD. And in 2009, he passed away. “When we first heard about the disease, we were clueless.
But I realised that I research and understand what my son was going through. Awareness about MD is still low; that’s why my wife and I began this foundation to help the children and parents dealing with MD,” said Louis. He also consults in other organisations. As he began explaining about the disease and the different stages of it and how it affected the child, Louis admits that things have changed for the better over the years. “Earlier, kids with MD used to live only until they were 12, but today, I am glad that it has gone up to 23 to 25.” Sangarsh chose to donate towards MD this year and Louis added that, “I am not sure about the financial benefits we will be getting through this concert but I am happy that it will create the necessary awareness about the disease at the very least.”
With the foundation working all over India and having tie-ups with medical professionals abroad, the board members of MDFI are all parents who had or are having kids with MD. “We work with 22,000 patients across the country. We try and provide them with medical support, financial support and rehabilitation support. All we wish to do is to control MD, because we don’t want to see other children suffer like our son did.” What was the one thing they’d like to change in India about MD? “We hope that the Indian government takes steps to subsidise drugs that come from abroad to treat the disease. Yes, there are drugs available in the market but at sky rocketing prices, which makes it inaccessible for parents who hail from poor background.”