In India, rare diseases are serious public health concerns. The data on how many people suffer from different rare diseases that are considered rare globally is lacking in India. According to the Ministry of Health and Family Welfare, the cases identified so far have been diagnosed at tertiary hospitals. Speaking of rare diseases, a new case has come to light from Telangana. An 8-year-old boy named Shivayya who is suffering from hydrocephalus (a neurological disorder) hails from Armur Mandal, Nizamabad district of the state.
Boddu Srikanth and Harika welcomed twin babies on March 1, 2016, while one of them couldn’t survive and died in just 41 days, Shivayya survived and was looked after with love and care. But after five months, the baby boy’s head began growing exceptionally huge. The worried parents went to the hospital to seek treatment. Many doctors recommended specialists and some of the hospitals ordered a huge number of tests including CT Scans and prescribed medicines so that the swelling goes down.
However, they were of no use and with passing days, Shivayya’s head started growing bigger and his condition worsened.
The family decided to take the boy to Gandhi Hospital in Secunderabad where the doctors revealed that Shivayya is diagnosed with hydrocephalus. It is a rare disease which builds-up fluid in the cavities deep within the brain. The extra fluid puts pressure on the brain and can cause brain damage. It is characterised by head enlargement in infants.
The doctors at the hospital have reportedly stated that it is impossible to treat the condition. The parents are begging for the treatment of their son. Shivayya’s head has grown huge and he can barely open his eyes, the motor function in his legs and hands is completely shut down which forbids him to move. He cannot consume solid food and can only have it if it is in liquid form. The family is giving Shivayya, Balamritham which has been prescribed by the Anganwadi Centre.
After Shivayya, Srikanth and Harika had another set of twins, a boy and a girl. The younger ones are healthier. But to cure Shivayya’s disease, the family has spent all its savings including the gold ornaments. They have nearly spent Rs 8 lakh on the treatment so far. Now. The family is pleading for help from the Telangana government to provide the proper health care for their son.
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