Mid-Day Special: Seven children, seven SSPE battles; families left with debt, grief and unanswered questions

Tanish Belkar wanted to join the armed forces Ovi Pujari wanted to become a police officer Sharvani Rakh dreamed of becoming a pilot Their families say they were healthy children before SSPE changed their livesTanish Ovi and Sharvani are among seven children whose families have shared their accounts with midday in part five of its ninepart series on Subacute Sclerosing Panencephalitis SSPE a rare neurological disease associated with measles infectionRead Also Mumbai boy with rare SSPE left bedridden as family seeks government support and medical aidIn the cases described by the families the illness began with symptoms such as fever vomiting seizures jerks or loss of balance As the disease progressed the children lost the ability to walk speak or perform basic activitiesA photo collage preserves memories of Tanish Belkar who died of SSPE on March 10 2026All seven eventually died Their families travelled to different cities looking for treatment Some sold land or gold and borrowed money For some the financial burden continued even after their children diedWhat the families wantgtgt More research into SSPEgtgt Better treatment and specialised neurological caregtgt Financial assistancegtgt Medical equipment and rehabilitationgtgt Support for caregiversFor parents the search for treatment often meant travelling from one hospital to another Their question now is what support is available after a child is diagnosed mdash and why families are left to carryso much of the burdenThe deceasedrsquos mother Jaya and brother AtharvaOvirsquos family spent Rs 40 lakhOvi Pujari of Hatkanangale Kolhapur was born on April 12 2018 Her parents said she was healthy vaccinated and wanted to become a police officer She suffered severe convulsions one morning After treatment in Kolhapur and further consultations CSF testing including at NIMHANS Bengaluru confirmed SSPE Her father Sagar continued looking for treatment and even explored options in ThailandRead also Mumbai boy with rare SSPE left bedridden as family seeks government support and medical aidThe family also procured Ribavirin from China and pursued treatment involving a brain shunt They say they spent around Rs 40 lakh on her treatment There was some improvement initially but her condition later deteriorated following complications including an infection after the shunt surgeryOvi died on May 25 2025 The family remains in debt Sagar has since started depositing Rs 3000 for every girl child born in their village in her memory For him Ovi was the familyrsquos LakshmilsquoHe wanted to join the armed forcesrsquoTanish Belkar of Karanjade Panvel was born on July 22 2010 His parents Mahadu and Jaya said he was an active child who wanted to join the armed forces In December 2022 he developed fever and vomiting After initial treatment failed to explain his condition further investigations including a cerebrospinal fluid examination at Apollo Hospital CBD Belapur confirmed SSPE Tanish gradually developed jerks and stiffness and lost his speech vision and ability to move normallyThe family sought treatment at Wadia Hospital in Parel and also arranged home care His father who worked with a private importexport firm at JNPT sold part of the familyrsquos agricultural land His motherrsquos ornaments were also sold to meet the expenses ldquoWe were willing to spend any amount of money if there was a treatmentrdquo said Mahadu Belkar Tanishrsquos fatherRead also MidDay Special SSPE steals 20yearold Navi Mumbai womanrsquos speech mobility and childhood dreamsTanish died on March 10 2026 ldquoHe was our son We were ready to do everything for him His death has taken away our emotionsrdquo said Belkar His younger brother Atharva 12 is now the focus of the familyFour other casesThe families of Ritik Jain of Nandurbar Sandeep Nikam of Baramati Harshal Patil of Jalgaon and Ruchita Ahire of Thane also shared their experiences of dealing with SSPE Their accounts describe children who developed neurological symptoms before being diagnosed with the disease and eventually died The details of these cases need to be expanded if they are to receive the same prominence as those of Ovi Sharvani and TanishThe farmerrsquos daughter who wanted to flySharvani Rakh of Valur village in Parbhani was her parentsrsquo first child Born on August 14 2016 she was a bright student who wanted to become a pilot Her illness began with fever and loss of balance The family first sought treatment in Nanded and Hyderabad before travelling to Pune Aurangabad and Jalna She was eventually diagnosed with SSPE and died on May 16 2024 Her father Anil a farmer dependent on cotton and soyabean cultivation said ldquoThe government should help families like oursrdquoWhat SSPE cost these familiesFamily Reported impactTanish Belkar Agricultural land and gold sold for treatmentOvi Pujari Around Rs 40 lakh spent family remains in debtSharvani Rakh Rs 56 lakh spent debt later around Rs 18 lakhOther four families Individual financial details need to be establishedRead also Panvel tribal family struggles to care for 13yearold with rare SSPE disease