Children with muscular dystrophy fly high for a change

COIMBATORE: A kite-flying event was held for children with Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA), both diseases which weaken the muscles making them eventually immobile, at the CODISSIA grounds on Saturday evening. Around 36 children with the two disorders participated in the event.
Dr BR Lakshmi, who runs Molecular Diagnostics, Counselling, Care and Research Centre (MDCRC), an NGO which works with children with both disorders, says these are genetic disorders which eventually make the affected children immobile."This usually comes to note when the children are three years. They fall without any reason and cause injury. The issues become serious as they grow and later are bound to wheelchairs," she said. What she did not want to say was that this has no cure and that many of them will not be alive after 20 or 25 years.
There are more than 1,500 such children in South India, she says. Most of this is caused due to marriages among close relatives, she says. At the same time, there are incidents even among those who are not married among relations. They conduct outings and recreational programmes for children like these, she added.
Most of them who were in the age group of 5 to 20 years were on wheelchairs. Many of them could join in making kites, but found it hard to hold the kites firmly in their hands. R Jayanthi, a housewife at Kalapatty area, brought her son R Shriram who stopped studying at class 4. "He was good at studies. But as he fell down too frequently, he had to stop going to classes," she says.
At the same time, most of them who are from middle class backgrounds, said they needed more government support. N Saravanan from Neelambur, whose 14-year-old son is affected by DMD says the government should take steps to provide vaccines to children like his. "There are vaccines which can be of relief for these children. But the costs are much more than we can bear," he says. Moreover, this is a problem which demands the attention and constant service of both parents. So they are unable to go for work and earn for a living, say parents like him.