The media showed up unexpectedly, when I was interviewing the family. The picture above is a news clipping, that was published in the local newspaper. Big thanks to Dr.Nibir Gosh and Himanshu, for volunteering their time in organizing the interview and helping with translation.

By Aditi Kantipuly

When a young child is diagnosed with a rare debilitating disease, the struggle a family faces often becomes a quest- a quest to find a cure.  But what happens when the quest for a cure crosses roads with life and death? This very question became the plight of one father in India, Mohaib Nazir, who petitioned for assisted euthanasia, last summer, for six of his eight children diagnosed with Megalencephalic Leukoencephalopathy otherwise known as MLC.
MLC, is a neurological disorder, characterized by deterioration of motor functions, epileptic seizures and mental decline. On an income of less than five dollars a day, Mr.Nazir asserts “I understand mercy killing is wrong, but I hope some farishta (angel), brings closure to their suffering”.

There is currently no cure for MLC and treatments most often focus on managing seizures. The family also voices that they have no social or financial support from relatives or friends, because of the stigma and discrimination against the children. This leaves a heavy burden on the mother to care for their children during the day, while Mr.Nazir is away at work.

When I had a chance to interact with the children, most of them were able to smile and respond to social cues.  Had the children been living in the US, the scenario would be different. The parents would have access to support groups, and the children would have access to special education classes as well augmentative communication devices. This may be as simple as a low tech system, such as picture communication boards and communication notebooks. (Currently in India, support groups for families with differently abled children, are far and few.)

Public awareness of rare diseases have been increasing in India over the past decade, but in low resource settings, improving the quality of life for a family should be equally as important as finding an effective treatment.

Mr. Nazir and his family are not alone in his struggle, similar scenarios may be echoed by the 70 million rare disease patients and their families living in India. To date, India has no legislation or recognition of a rare disease. The successful impact of legislation on orphan drug development in US and European Union has evoked some experts and patient advocacy groups to propose that legislation for rare diseases and orphan drugs should be a high priority for India alike.

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