Mid-Day Special: SSPE steals 20-year-old Navi Mumbai woman’s speech, mobility and childhood dreams

For three years 20yearold Shraddha has needed help to tie a rakhi to her brothers Dhiraj 21 and Om 16 Her hands have to be guided and her movements supportedldquoEarlier Shraddha would tie the rakhi herself and immediately demand a gift She would wait for her brothers and tease them For the last three years that has been missing from our livesrdquo says her mother Sheetal 38Shraddha was diagnosed with Subacute Sclerosing Panencephalitis SSPE in 2024 Today she cannot walk or speak and needs constant careBefore SSPEShraddha the only daughter of Sheetal and Yuvraj Bhore 42 grew up in Sector 5 Ghansoli She scored 72 per cent in Class 10 and enrolled in a fashion designing course But her real passion was danceBhajirao Wagmore Shraddharsquos uncle speaks about her conditionThe family had begun imagining a future for her that included a career marriage and the dancing she loved She was engaged in 2022 to a young man known to the family Then in March 2023 everything changedFrom fever to diagnosisMarch 2023 A flulike illness Routine blood tests were negative according to the family Over the following months Her walking became difficult speech slowed balance deteriorated and she began falling2024 Cerebrospinal fluid was sent to NIMHANS BengaluruDiagnosis SSPE a rare progressive neurological disorder associated with persistent measles virus infectionShraddha Bhore 20 is supported by her mother Sheetal as she struggles to walkldquoWe initially thought she may have fallen sick because of exertion We were worried about the sudden jerks and could not understand what was happeningrdquo says YuvrajThe family consulted several doctors including a psychiatrist before the diagnosis was confirmedldquoWe consulted every possible doctor hoping someone would diagnose the reason for my daughterrsquos deteriorating conditionrdquo Yuvraj sayslsquoShe may not survive six monthsrsquoAt a South Mumbai hospital Yuvraj says a senior neurologist told the family that Shraddha might not survive six monthsShraddha Bhorersquos parents Sheetal and Yuvraj Bhore at their home in GhansolildquoHe threw the file on the table My heart got pierced It felt like the whole hell broke looserdquo he recallsThe family decided to continue treatmentldquoMy wife and I could not accept this We decided not to give up and pursued every possible treatment for her She has now surpassed the sixmonth prognosis and is showing some signs of improvementrdquo Yuvraj saysA home turned into a care centreThe family has arranged a special bed and physiotherapy equipment at home Shraddha undergoes regular therapy in Bhandup and requires constant supervision Yuvraj says the family has also pursued a treatment involving injections into her spine at regular intervalsThe Bhore familyrsquos home in Ghansoli Navi MumbaiFourteen injections have been administered so far he says with the dosage increased over time The family believes the treatment has slowed the disease though its effectiveness would need to be assessed by her treating specialistslsquoWe understand when Shraddha is in painrsquoShraddha cannot speak or walk and cannot be left alone Her family has learnt to read her expressions and criesldquoShe is unable to speak or utter any word but when she develops pain she screams We understand that she is sufferingrdquo says her uncle Bhajirao WagmoreThe family says cough and congestion are particularly worrying because of the risk of respiratory complicationsThe festivals have changedShraddha once made rangoli danced and looked forward to Ganpati Diwali Navratri and dandiya Now she can only watch the celebrationsldquoShe used to make rangoli She loved dancing and dandiya She would enjoy Diwali and Ganpati Now we celebrate but it is not the same The fun is missingrdquo says Sheetal ldquoShe loved dancing Today that is only a past memoryrdquoRs 26 lakh and countingThe Bhore family says it has spent more than Rs 26 lakh on Shraddharsquos careRs 26 lakhSpent on treatment so far according to the family14Spinal injections administered according to YuvrajConstantSupervision physiotherapy and caregivingldquoWe have spent more than Rs 26 lakh We are ready to spend more We will do whatever is possible All we want is that Shraddha should be comfortablerdquo says YuvrajlsquoOur fight is for others toorsquoThe Bhores say they have approached Mantralaya and met the CM and DCM seeking assistance for families affected by SSPEYuvraj says the family received Rs 25000 a month for four months through the CM and Deputy CM relief funds but the assistance was later stoppedThrough the SSPE Maharashtra Group the family is seekinggtgt Sustained financial assistancegtgt Early diagnosis and greater awarenessgtgt Specialised rehabilitationgtgt More governmentfunded researchgtgt Better treatment and preventive measuresldquoIf the govt could ensure vaccines within such a short period during COVID19 then why canrsquot SSPE and these children be taken seriouslyrdquo asks YuvrajlsquoThis should never happen to anyonersquoFor the Bhores the cost of SSPE goes far beyond Rs 26 lakh spent It has meant watching their daughter lose her independence education dance and ordinary family celebrations ldquoThis disease should never happen to anyone When even one child in a family is affected the entire family goes into depression and suffers tremendouslyrdquo says YuvrajldquoWe want the government to develop a vaccine or medicine for this disease so that future generations and children can benefitrdquo For now the family continues to care for Shraddha pursue treatment and hope Their greater demand is that other families should not have to wait until a child loses the ability to walk speak and live independently before the system takes noticeFiance who stayedShraddharsquos fiance has continued to stand by her the family says When her condition worsened they told him he could move on He refused ldquoWe told the boy that Shraddharsquos health condition was not good and that he should call off the engagement But he is ready to wait for years until she recovers and they can marryrdquo says Wagmore There is no certainty about what the future holds but the family says his decision has given them another reason to hope