Keonjhar district administration goes back on promise made to Wilson’s disease patient

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Keonjhar: That the district administration has stopped providing assistance money to a patient suffering from rare Wilson’s disease came to the fore Monday when the patient along with his parents reached the Collector’s grievance cell. Patient’s parents had requested for euthanasia back in 2019.

Like any other parents, Dhaneswar Behera and Sandhyarani Behera were also happy after they were blessed with a son. They named him Rajesh and also distributed sweets. But they hardly knew that their happiness would be short-lived.

It was 2008 when Rajesh, then 12-year-old, was diagnosed with Wilson’s disease. Now he is 24.  Dhaneswar works as a gana sikshaka with a salary of Rs 6, 400. He takes home Rs 5,200 after Provident Fund deduction. Sandhyaranai is a home maker.

The couple said they have already spent all their savings to get their son cured. They have even borrowed money from friends and relatives. Now they have been spending Rs 3,500 towards medicine cost.

“Being parents, we cannot see our son writhing in pain in front of us. July 13, 2019 we requested the President of India to grant us euthanasia. Thereafter, the district administration had promised us to pay a fixed amount every month towards his medicine expenses. But it has given Rs 3,500 only for once in last seven months,” alleged Dhaneswar, adding, “He has submitted bills for three months which are yet to be reimbursed.”

The couple urged the administration to provide at least Rs 10,000 a month from district mineral fund (DMF) so that they can buy him medicine and take care of him.

PNN

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