7-yr-old girl suffering from rare brain disorder dies in Kolhapur
Kolhapur: Seven-year-old Ovi Pujari passed away on Sunday evening from subacute sclerosing panencephalitis (SSPE) — a rare and devastating brain disorder stemming from complications of a measles virus infection.
Her father, 36-year-old Sagar Pujari, exhausted every possible avenue, even importing costly injections from China, in a desperate, but ultimately futile, battle to save his daughter.
Ovi had been a vibrant and normal child until convulsions began when she was in Class I. Tests revealed the grim diagnosis of SSPE, a condition so rare it affects only one or two children per lakh. Medical professionals informed Sagar that despite his efforts, no guaranteed treatment existed.
Sagar, a small hotel proprietor, sold his property and borrowed money from a local society in Hatkanangle tehsil of Kolhapur district to facilitate treatment at a specialist neurological hospital.
India faces a scarcity of the Ribavirin vaccine. Upon learning about its availability in China, Sagar invested substantial money to import 30 doses. Currently, no govt assistance exists for such cases. Earlier, in April, approximately 25 parents demonstrated outside Mantralaya seeking financial support for their children's treatment.
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Health minister Prakash Abitkar acknowledged the presence of 80-90 such cases across Maharashtra.
Recently, deputy CM Eknath Shinde provided Rs 10 lakh to Sagar Pujari for Ovi's treatment after learning about her condition during his Ichalkaranji visit.
"She was on ventilator in the last two days. The disease progressed to stage four. There is a zero survival rate in such patients. The condition develops if the virus gets to the brain and starts eating it slowly. The symptoms start with convulsions, then the brain activity declines, leading to an inability to eat and walk. Ovi passed away on Sunday evening," said the doctor treating Ovi at a private hospital.
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