Mothers in Maharashtra Face Heavy Toll of Caring for Children With SSPE

Madhuri Thorve, a 35-year-old widowed mother living in Vanjanwadi, Karjat, is navigating a five-year battle caring for her 10-year-old son, Aahan, following his diagnosis with Subacute Sclerosing Panencephalitis (SSPE).

The incurable neurological condition has severely impacted Aahan's health and physical abilities. Five years after the initial diagnosis, he is unable to speak, walk, chew, or drink independently, and his vision is progressively fading. Thorve's daily life is entirely devoted to his intensive care, which requires an expenditure of approximately Rs 50,000 each month.

Her experience highlights the severe challenges faced by families managing the debilitating illness across the state. In Chandrapur, another widowed mother, Lata Borkar, is caring for her 12-year-old son, Humanshu, who has also been diagnosed with SSPE.

The cost of managing Humanshu's medical needs placed an immense financial strain on the family, ultimately forcing them to sell their farmland to pay for his treatment. The mounting pressure and distress surrounding the illness and caregiving took a further toll on the household, culminating in the death of Borkar's husband by suicide.

Both households continue to bear the extensive physical, emotional, and economic weight of providing full-time care to their sons as they cope with the ongoing progression of the incurable disease.