BHUBANESWAR: Members of Odisha Duchenne Muscular Dystrophy Association (ODMDA) on Monday staged a demonstration seeking intervention of Chief Minister Naveen Patnaik for adequate treatment facilities for Duchenne Muscular Dystrophy (DMD) affected children/adolescents in the state.
Members and parents of the DMD-affected children who staged the protest at Mahatma Gandhi Marg said several children in Odisha are suffering from the rare disease that starts showing symptoms such as inability to stand up and walk or climb stairs at the age of 4-5 years.
When the children attain the age of 12-14 years, they become wheelchair-bound and thereafter there is no certainty to life. “Since there is no effective treatment available so far, some of the DMD-affected kids in the state have already lost their lives,” said the parent of a child affected with the disease. He said although AON therapy is available abroad, the cost runs upto crores per annum, which is beyond their capacity.
The association members demanded provision of treatment for DMD-affected children/adolescents, appropriate physiotherapy centres for these kids at PHC/CHC/DHH level, electric wheelchair facility and provision of one-time grant of Rs 15 lakh to the family of the DMD children, including those who have lost their wards.
They also demanded monthly assistance of Rs 15,000 for each family and free genetic test of children showing the symptoms and insurance scheme for DMD children. The association members also submitted a memorandum to director of Health Services Dr Bijay Mohapatra. “The director assured all necessary support. He, however, said that the matter is under sub-judice in high court for which they are waiting for the February 8 hearing,”one of the association members said.
In its last hearing in November the Orissa High Court had issued direction to AIIMS-Bhubaneswar to facilitate treatment of 16 children suffering from DMD. It had also directed AIIMS-Bhubaneswar to issue “written advices to enable them to not only receive the financial assistance of `50 lakh but also treatment at the respective COE to which they will be referred to.”