The 2022 Revathi directed Bollywood film 'Salaam Venky' starring Kajol that left audiences teary eyed at the end of the three hours, showcased the emotional struggles and physical pain that children suffering from a rare genetic disorder - Duchenne Muscular Dystrophy - and their families go through.
Inspired by a true-life story, the evocative film highlighted the need for a strong support system for children suffering from this disorder. Taking a cue, their parents have decided to carry out a rally in New Delhi on March 24 to draw the government’s attention to their children’s condition and the need to develop a holistic environment for them. The march will held at Jantar Mantar under the banner 'SOS - Save our Sons'
Duchenne Muscular Dystrophy is a rare muscular wasting disease that starts with the weakening of the leg muscles. This genetic disorder starts since birth, and gradually affects all the muscles of the body, making the child wheelchair bound by the time he is in his teens. The disease commonly affects boys and is diagnosed only when a child reaches the age of five to seven years. According to data one in every 3500 child born in India suffers from this disorder.
Currently there is no treatment in medical science. Some experimental drugs have shown promise in the developed world, but with their exhorbitant cost, they are out of reach of the ordinary Indians.
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By coming together in New Delhi later this month, parents of such children hope to sensitise the society about the struggles children and their families go through. They are demanding the government to expedite the process of experimental treatment like gene therapy and exon skipping. Further, they want the government to support and fund indigenous research, and are also requesting the government to consider providing free treatment and physiotherapy to children suffering for it.