Mid-Day Special: ‘I cannot leave Aahan’; Mother’s five-year battle caring for son with incurable SSPE

For Madhuri Thorve 35 life now revolves around her 10yearold son Aahan Five years after he was diagnosed with Subacute Sclerosing Panencephalitis SSPE he cannot speak walk chew or drink on his own and his vision is fadingHundreds of kilometres away in Chandrapur Lata Borkar is caring for her 12yearold son Humanshu who has the same disease His illness came at a devastating cost the family sold its farmland to pay for treatment while Latarsquos husband later died by suicidePart 4 of middayrsquos ninepart series on SSPE looks at two mothers carrying the medical financial and emotional burden of a disease for which there is no cureAahan From a happy child to a bedridden boyAahan was born on August 12 2016 and grew up as an active playful child in Jogeshwari EastDuring the COVID19 period when he was around fourandahalf he developed fever and began losing his balance Initial treatment and an MRI did not provide answers As his condition worsened he was admitted to Lilavati HospitalDoctors eventually conducted a spinal tap and sent his cerebrospinal fluid for specialised testing The result was SSPE mdash a diagnosis the family had never heard ofldquoWe had never even heard of SSPE When the doctor told us that Aahan had SSPE and that there was no cure or medicine that could reverse the disease all hell broke looserdquo said Madhuri ThorveAahan spent 21 days in hospital He gradually lost his ability to speak and walk and became bedriddenDuring that hospital stay Madhuri met Kalpana Bhosale Jadhav whose son Shauryas story featured in Part 1 of this series She too had brought her son to Lilavati seeking a second opinionTenyearold Aahan has been battling SSPE for five years with his condition continuing to deteriorateFive years later everything revolves around AahanMadhuri has barely left home in five yearsAahan nowCannot speak walk chew or drink independentlyNeeds constant care and supervisionRequires diapers medicines and physiotherapyHas difficulty during respiratory complicationsHas gradually lost vision according to his motherHas a disability certificate recording 90 per cent disabilityMadhuri estimates the family spends around 50000 a month on medicines diapers physiotherapy and hospitalisationldquoI have not gone anywhere outside the house for five years I cannot even imagine leaving Aahan and going outrdquoAs Aahan became ill the family fell apartKalpit Aahans father lost his job after the childs hospitalisation The family eventually moved to KarjatAbout a year and a half ago Kalpit travelled to Pune for treatment for jaundice Madhuri could not accompany him because Aahan could not be left aloneShe was later told that her husband had died during treatmentToday Madhuri is Aahans sole fulltime caregiver supported financially by her familyldquoThere are times when I think of ending my life But then I think about Aahan Who will take care of him Thinking about my son stops me from having those thoughtsrdquoMadhuri feeds her 10yearold son Aahan at their home in Vanjanwadi Karjat PicsSayyed Sameer AbedilsquoWe followed the vaccination programmersquoMadhuri says Aahan received all his vaccinations including the measles vaccineldquoWe had given Aahan all his vaccines when he was born including the measles vaccine Then why and how did he get SSPErdquoShe says the family approached officials seeking financial assistance but received no meaningful supportldquoWe did not even get a wheelchair which could have helped us take our bedridden child outside the houserdquoShe wants financial assistance medicines physiotherapy and equipment for families living with SSPEThe cost of keeping Aahan aliveRs 50000Estimated monthly cost of care90 per centDisability recorded on his certificate5 yearsTime Madhuri has cared for himRs 2500Monthly disability pension Madhuri says he is entitled to but has not receivedIn Chandrapur another family paid an even heavier priceHumanshu Borkar was about six when neurological symptoms began during the COVID19 lockdown in March 2020 He developed jerking movements difficulty speaking and eating and problems maintaining his balanceAfter consultations in Chandrapur Nagpur and Bramhapuri including cerebrospinal fluid testing and an EEG he was diagnosed with SSPEThe family says it spent Rs 45 lakh in the first three to four months and around Rs 20 lakh overallThe Borkars who owned about two acres of farmland eventually sold the land to fund their sons treatment Diapers urine bags and other everyday supplies added to the burdenA fathers despairHumanshus father Sandeep Borkar was 35 and deeply involved in his sons care The family says the financial and emotional strain took a severe toll on himLata recalled that Sandeep spent the night before his death with HumanshuldquoOn the night before his death in November 2020 relatives say Sandeep hugged Humanshu and remained with him through the night At around 8 am the next morning he left the house and did not returnrdquoFamily members later learned that Sandeep had died by suicideHe left behind Lata 34 and their sons Tanmay 14 and Humanshu 12lsquoI want my brother back like beforersquoThe disease has also changed Aahans relationship with the rest of his family His 13yearold cousin Varad Karale remembers him as the plump playful child he called ldquoBunpavrdquo ldquoAahan was very active and playful I miss playing with him I always pray that he recovers fast and starts playing with me again I want my brother back like beforerdquoAahans grandparents Mohan and Alka Thorve who once played with him and took him to school now watch him confined to his bedldquoI cannot see my grandchild and my daughter sufferrdquo says Aahans grandmother Vijaya GangawaneWhat these families are asking forFor both families the demands are basicRegular medicinesPhysiotherapy and hospital careWheelchairs and medical equipmentFinancial assistanceSupport for caregiversMadhuris demand is simpleldquoI have only Aahan I cannot leave him The state government should come forward and provide all parents of SSPE children with financial aidrdquoFor families living with SSPE the fight is no longer only about finding a cure It is about being able to care for a child who cannot care for himself mdash without losing everything else in the process