“Let Us Die with Dignity”: Maharashtra Families Plead for Euthanasia Amid SSPE Crisis

In a heart-wrenching appeal that underscores a growing public health crisis in Maharashtra, the father of a 15-year-old boy suffering from a rare neurological disease has written to Chief Minister Devendra Fadnavis, seeking permission for euthanasia.

Mahadu Belkar, father of Tanesh Belkar—one of 67 children across the state diagnosed with Subacute Sclerosing Panencephalitis (SSPE)—expressed in his letter the unbearable emotional agony of watching his child deteriorate daily, in the absence of adequate government support.

“If the government cannot help us save our children, at least give us the right to end our pain through euthanasia,” he wrote, reflecting the sense of helplessness and hopelessness that grips dozens of families like his.

SSPE is a rare, progressive and fatal neurological condition that typically follows a measles infection, often manifesting years later. While it is considered preventable with proper immunisation, its treatment remains palliative, costly, and largely ineffective—leaving families emotionally shattered and financially drained.

Despite Belkar's plea and similar appeals from others, the government’s response has been minimal. Apart from some perfunctory expressions of sympathy from a few officials, there has been no formal communication or action from the Chief Minister’s office.

“We are forced to watch our children suffer every moment—unable to move, speak, or even respond. Meanwhile, the government has remained silent,” Belkar told mid-day, adding that the authorities continue to delay including SSPE in the national list of rare diseases.

The despair is not limited to his household. In another tragic instance, seven-year-old Ovi Puri succumbed to SSPE despite her parents spending over ₹30 lakh on treatment. “No one seems to care. Officials are indifferent and have left us to fend for ourselves,” Belkar said.

In an even more devastating turn, 22-year-old Ritik Jain’s mother, Meenabai, passed away on June 23—reportedly from the emotional trauma of watching her son’s health decline without receiving any substantial help. Her husband, Mangilal Hukamichand Jain, said, “She died from the stress. Now I’m alone with two children, and one of them is terminally ill. I have no idea how to survive this.”

Families say their demands are not for financial aid alone, but for urgency and sincerity from the government in addressing SSPE. Pradeep Patil, who lost his nine-year-old daughter to the disease last year, said: “We don’t want money—we want a cure. Research must be accelerated. Children as young as six months and young adults up to 24 years are being diagnosed. The numbers are rising fast.”

He added, “A father in Chandrapur recently died by suicide, unable to cope with his child’s illness. Will the government act only after more such deaths?”

A neurologist from a private Mumbai hospital said the condition’s unpredictability and unclear causes complicate treatment. “SSPE affects people across age groups and sometimes appears in vaccinated individuals, which makes research even more challenging,” the doctor said, adding that years of focused research would be required to develop effective medication.

Responding to the growing outcry, Public Health and Family Welfare Minister Prakash Abitkar acknowledged the difficulty, stating: “No country has found a cure yet, but our researchers are working on it. The Chief Minister has instructed us to allocate funds from the relief fund for SSPE families. We’ve also submitted a proposal to the Centre to include SSPE in the list of rare diseases.”

Abitkar urged families not to panic and to “cooperate with the government.”

However, calls to the Chief Minister’s Office on Wednesday went unanswered, further deepening the sense of abandonment felt by affected families.

As SSPE continues to silently claim young lives and devastate families, the question remains: how long before the government treats this as the urgent humanitarian crisis it clearly is?

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