20 August,2026 11:59 AM IST | Mumbai | Vinod Kumar Menon
Aahan with his mother Madhuri and cousin Varad at their home in Vanjanwadi, Karjat
Hundreds of kilometres away in Chandrapur, Lata Borkar is caring for her 12-year-old son Humanshu, who has the same disease. His illness came at a devastating cost: the family sold its farmland to pay for treatment, while Lata's husband later died by suicide.
Part 4 of mid-day's nine-part series on SSPE looks at two mothers carrying the medical, financial and emotional burden of a disease for which there is no cure.
Aahan was born on August 12, 2016, and grew up as an active, playful child in Jogeshwari East.
During the COVID-19 period, when he was around four-and-a-half, 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 Hospital.
Doctors eventually conducted a spinal tap and sent his cerebrospinal fluid for specialised testing. The result was SSPE - a diagnosis the family had never heard of.
"We 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 loose," said Madhuri Thorve.
Aahan spent 21 days in hospital. He gradually lost his ability to speak and walk and became bedridden.
During that hospital stay, Madhuri met Kalpana Bhosale Jadhav, whose son Shaurya's story featured in Part 1 of this series. She too had brought her son to Lilavati seeking a second opinion.
Ten-year-old Aahan has been battling SSPE for five years, with his condition continuing to deteriorate
Madhuri has barely left home in five years.
Aahan now:
Madhuri estimates the family spends around â¹50,000 a month on medicines, diapers, physiotherapy and hospitalisation.
"I have not gone anywhere outside the house for five years. I cannot even imagine leaving Aahan and going out."
Kalpit, Aahan's father, lost his job after the child's hospitalisation. The family eventually moved to Karjat.
About 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 alone.
She was later told that her husband had died during treatment.
Today, Madhuri is Aahan's sole full-time caregiver, supported financially by her family.
"There 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 thoughts."
Madhuri feeds her 10-year-old son Aahan at their home in Vanjanwadi, Karjat. Pics/Sayyed Sameer Abedi
Madhuri says Aahan received all his vaccinations, including the measles vaccine.
"We had given Aahan all his vaccines when he was born, including the measles vaccine. Then why and how did he get SSPE?"
She says the family approached officials seeking financial assistance but received no meaningful support.
"We did not even get a wheelchair, which could have helped us take our bedridden child outside the house."
She wants financial assistance, medicines, physiotherapy and equipment for families living with SSPE.
Rs 50,000
Estimated monthly cost of care
90 per cent
Disability recorded on his certificate
5 years
Time Madhuri has cared for him
Rs 2500
Monthly disability pension Madhuri says he is entitled to but has not received
Humanshu Borkar was about six when neurological symptoms began during the COVID-19 lockdown in March 2020. He developed jerking movements, difficulty speaking and eating, and problems maintaining his balance.
After consultations in Chandrapur, Nagpur and Bramhapuri, including cerebrospinal fluid testing and an EEG, he was diagnosed with SSPE.
The family says it spent Rs 4-5 lakh in the first three to four months and around Rs 20 lakh overall.
The Borkars, who owned about two acres of farmland, eventually sold the land to fund their son's treatment. Diapers, urine bags and other everyday supplies added to the burden.
Humanshu's father, Sandeep Borkar, was 35 and deeply involved in his son's care. The family says the financial and emotional strain took a severe toll on him.
Lata recalled that Sandeep spent the night before his death with Humanshu.
"On the night before his death in November 2020, relatives say Sandeep hugged Humanshu and remained with him through the night. At around 8 a.m. the next morning, he left the house and did not return."
Family members later learned that Sandeep had died by suicide.
He left behind Lata, 34, and their sons Tanmay, 14, and Humanshu, 12.
The disease has also changed Aahan's relationship with the rest of his family. His 13-year-old cousin Varad Karale remembers him as the plump, playful child he called "Bunpav". "Aahan 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 before."
Aahan's grandparents, Mohan and Alka Thorve, who once played with him and took him to school, now watch him confined to his bed.
"I cannot see my grandchild and my daughter suffer," says Aahan's grandmother Vijaya Gangawane.
For both families, the demands are basic:
"I have only Aahan. I cannot leave him. The state government should come forward and provide all parents of SSPE children with financial aid."
For 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 - without losing everything else in the process.
