Mumbai boy with rare SSPE left bedridden as family seeks government support and medical aid

They were healthy children who played laughed and went to school Then came measles Years later some began falling losing memory changing behaviour mdash and slowly losing the ability to walk speak and seeView this post on InstagramA post shared by midday middayindiaAfter months sometimes years of searching for answers tests confirmed the diagnosisSSPE a rare and progressive neurological disease linked to measles infectionParents have sold gold and land exhausted savings and taken loans to keep their children alive Many say government support has been little or nonexistentOver nine days midday tells the stories of these children and their families mdash and asks why they have been left to fight this battle largely on their ownShaurya playing as a child before he was diagnosed with SSPEFIVE years ago Kalpana JagtapBhosale watched her son walk into Junior KG like any other child mdash active cheerful and healthy Today nineyearold Shaurya is bedridden unable to see speak or move independentlyA series of falls buckling memory loss and sudden behavioural changes had begun when he was a young schoolgoing child He was later diagnosed with Subacute Sclerosing Panencephalitis SSPE a rare and progressive neurological disease associated with measles infectionJagtapBhosale says Shauryas condition deteriorated rapidly Within two months of his diagnosis he became bedridden For the past five years the family has provided roundtheclock care while dealing with the cost of medicines equipment and other supportNow she has approached the Maharashtra State Legal Services Authority MSLSA seeking help for Shaurya and other families dealing with SSPEShaurya after being diagnosed with SSPEFive years of careThenShaurya was attending Junior KG and leading a normal childhoodSymptoms beganFalls buckling memory loss and behavioural changesDiagnosisSSPEWithin two monthsHe became bedridden according to his motherTodayAt nine he requires assistance with basic daily needs and constant medical carelsquoThe diagnosis completely changed our livesrsquoldquoThe lively cheerful child who once went to school and dreamed of a normal future has been reduced to an extremely fragile existencerdquo JagtapBhosale said in her representationldquoHis presence in our home is now marked by silence and constant medical care and times howling in painrdquoWhat the families are seekingThe representation to the legal services authority seeks help withbull Monthly financial or maintenance assistancebull Free or subsidised medicines and treatmentbull Medical equipmentbull Physiotherapy and rehabilitationbull Nursing and other caregiving supportbull Legal assistance in pursuing the pending PILThe families say the continuing cost of care has exhausted their savings in several casesThey also say there is no reliable statewide mapping of children living with SSPE and that families are largely left to manage the medical and financial burden themselvesHow many children are affectedThe representation refers to around 60 to 62 children with SSPE in MaharashtraHowever a July 2025 letter from Maharashtra Public Health Minister Prakash Abitkar to the Union Health Minister placed before the Bombay High Court recorded 67 diagnosed cases in Maharashtra at that timeFamilies have already approached the governmentAccording to the families representations have been made to the Chief Minister Deputy Chief Minister and Public Health MinisterThey also held a peaceful protest outside Mantralaya seeking support for children with SSPE The families say they are seeking a system that can help meet the continuing costs of medicines specialised equipment rehabilitation and care rather than leaving each family to manage the burden on its ownThe vaccination questionThe representation also raises concerns about measles vaccinationThe families claim that around 90 per cent of affected children had been vaccinated against measles while some were vaccinated late or had contracted measles at around six or seven months of age before the standard vaccination schedule The parents are questioning what responsibility the government bears in cases where children who were reportedly vaccinated subsequently developed SSPEThey are seeking answers but also government accountability and support for families now living with the consequences of the diseaseThe case before the Bombay High CourtThe families representation also refers to PIL No 119 of 2025 filed by Mahadu Lahanu Belkar before the Bombay High CourtThe petition seeks a policy for healthcare and welfare of people suffering from SSPEAt a hearing on April 17 2026 the court recorded that Maharashtra did not have a specific policy for SSPE and that the Centre had taken the position that SSPE was not covered under the National Policy for Rare Diseases because it is not curableThe court directed the Centre to file a reply According to the families the matter was last taken up in April 2026 and has not been listed for further hearing since The petition seeks among other things financial assistance for affected families and greater medical supportWhat the mother wants from MDLSAJagtapBhosales appeal is not limited to Shauryas treatment She wants the legal services machinery to help affected families understand and pursue the relief available to them and to assist in the pending court proceedingsldquoPlease do not let our children be forgottenrdquoldquoWe are desperately seeking compassionate support and meaningful intervention so that children like my child are not forgottenrdquo her representation saysFor JagtapBhosale the appeal comes after five years of caring for a child who went from walking into school to being completely dependent on othersShe is now asking for help with the cost of keeping him alive and cared for mdash and for a system that does not leave families dealing with a rare disease to fight the battle aloneMDLSA Limited roleAn MDLSA official requesting anonymity said the authority had received JagtapBhosales representation and forwarded it to the Maharashtra District Legal Services Authority MDLSAldquoWe have received the letter written by Kalpana and forwarded it to the Maharashtra Legal Services Authority MLSA We have a limited role to play in the matter as it concerns other authorities Our hearts go out to the families but there is little we can do beyond thatrdquo the official said