Keonjhar: The district administration has stopped providing assistance money to a patient suffering from rare Wilson’s disease. The matter came to the fore Monday when the patient along with his parents reached the Collector’s grievance cell. The patient’s parents had requested 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 teacher with a salary of Rs 6,400. He takes home Rs 5,200 after Provident Fund deduction. Sandhyarani is a homemaker.
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 medical expenses. But it has given Rs 3,500 only for once in last seven months,” alleged Dhaneswar. He added, “We have 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 their son medicines and take care of him.
About the rare disease:
Wilson’s disease is a genetic disorder in which excess copper builds up in the body. Symptoms are typically related to the brain and liver. Liver-related symptoms include vomiting, weakness, fluid build-up in the abdomen, swelling of the legs, yellowish skin and itchiness. Brain-related symptoms include tremors, muscle stiffness, trouble speaking, personality changes, anxiety and seeing or hearing things that others do not.