Parents of children with the rare disorder of Duchenne Muscular Dystrophy (DMD) who went to court in February 2023 have very little hope as their case has seen no progress. DMD is a severe, progressive genetic disorder that causes muscle degeneration and primarily affects boys. For the parents, each September 7, marked worldwide as the disease awareness day, serves as a stark reminder that a solution remains far off. There were parents of about 30 boys who were part of the petition before the Bombay High Court which sought directions to the Centre to provide free or subsidised treatment to children with such rare disease.

Anand Shah, one of the heads of the city’s Parent Project Muscular Dystrophy, said they have received nothing substantial out of the petition as of now. “There are only more dates,” he said. There are a little over 25,000 children with DMD in the state; all living with no viable cure in the country. The court has sought a response from the Centre and the next date is scheduled at the end of September. Shah’s son was diagnosed with the disorder in 2009.