Shivayya’s head has grown huge and he can hardly open his eyes.
Shivayya is diagnosed with hydrocephalus, a rare disease that causes fluid to build up in cavities deep within the brain.
In India, rare diseases are a serious public health concern. The number of people suffering from various rare diseases considered rare globally is low in India. According to the Ministry of Health and Family Welfare, the cases identified so far have been diagnosed in tertiary hospitals. Talking about rare diseases, a new case has come to light from Telangana. Shivayya, an 8-year-old boy from Armoor mandal in Nizamabad district of the state, is suffering from hydrocephalus (a neurological disorder).
Boddu Srikanth and Harika gave birth to twin babies on March 1, 2016. While one of them could not survive and died in just 41 days, Shivayya survived and was looked after with love and care. But after five months, the baby’s head began to grow exceptionally large. Distressed relatives reached the hospital for treatment. Many doctors recommended specialists and some hospitals ordered a large number of tests, including CT scans and prescribed medications so that the swelling subsided.
However, they were of no use and with the passing days, Shivayya’s head started getting bigger and his condition worsened.
The family decides to take the boy to Gandhi Hospital in Secunderabad where doctors reveal that Shivayya has been diagnosed with hydrocephalus. This is a rare disease that causes fluid to build up in cavities deep within the brain. The extra fluid puts pressure on the brain and can cause brain damage. It is characterized by head growth in infants.
Doctors at the hospital have reportedly said that the condition is impossible to cure. Parents are pleading for son’s treatment. Shivayya’s head has grown enormous and he can barely open his eyes, he has a complete loss of motor function in his legs and arms which prevents him from moving. He cannot consume solid food and can get it only if it is in liquid form. The family is giving Shivayya, Balamritham as prescribed by the Anganwadi centre.
After Shivayya, Srikanth and Harika are blessed with twins, a boy and a girl. Small ones are healthy. But the family spends all their savings including gold ornaments to cure Shivayya’s illness. He has so far spent about eight lakh rupees on the treatment. Now. The family is pleading with the Telangana government for help in providing proper health care for their son.
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