The parents of the children suffering from the disease put forth a demand before the government that the institutes doing research on DMD should be stopped. Every facility and fund should be made available to them. Free medicines and physiotherapy should be provided to children suffering from DMD.
Image Credit source: TV9 Network
New Delhi: A large number of innocent children gathered at Jantar Mantar in the national capital Delhi on Friday. All these children are suffering from a fatal disease named Duchenne muscular dystrophy (DMD). They are unable to walk on their feet. In Jantar Mantar, the children have sought various kinds of help from the government. Placards were also seen in their hands. Slogans like Jeevan Daan, Jeevan Daan were seen written on these.
Children sitting on wheel chairs had come to Jantar Mantar with their parents. Parents were seen wearing ‘Save Our Sons’ badges in their hands. This awareness rally was organized at Jantar Mantar to ensure that Duchenne Muscular Dystrophy (DMD) does not spread to more children in the country. About 500 parents from 21 states across the country were present on this occasion.
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During this rally, parents of children suffering from DMD have put their struggles related to the upbringing of these children in front of everyone. Along with this, many demands have also been made to the government. Parents say that the government should prepare a database of children suffering from DMD. Such a panel should be constituted, in which representatives of the government should be included. Along with this, some medical experts and parents of some children suffering from this disease should also be included. By doing this, the efforts going on for the treatment of children suffering from this disease will accelerate.
Free medicines should be given to the afflicted children
The parents of the children suffering from the disease put forth a demand before the government that the institutes doing research on DMD should be stopped. Every facility and fund should be made available to them. Free medicines and physiotherapy should be provided to children suffering from DMD. The government has identified hundreds of rare diseases under the National Policy for Rare Diseases (NPRD 2021). A separate category of ‘fatal rare diseases’ should be made out of this list of these rare diseases.
Research should be done in the country to make medicine
During this, Praveen Singla, associated with the group of DMD parents, said that there is no cure for DMD. The parents of the children who are victims of this want that research should be done in the country itself to make medicine for this disease. Until its cure is found, government cooperation should also be given in taking care of the children. Haryana poets Arun Jaimini and Chirag Jain also participated in this awareness rally at Jantar Mantar.
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What is Duchenne muscular dystrophy?
Let us tell you that ‘Duchenne muscular dystrophy’ is a rare genetic (genetic) disease caused by a disturbance in a gene. This disease starts with the weakness of the leg muscles. Due to this the child starts having difficulty in walking. Soon this disease engulfs every muscle of the body including the heart and lungs. Out of every 3500 males born in India, one boy is born with DMD. This disease is rarely seen in girls.
(Press note)
Source: www.tv9hindi.com”