Kuber, the eldest son of a sweet shop owner in Agra, is getting ready to go to the mosque to offer his prayers on the occasion of Shab-e-Baraat. But six of his brothers and sisters cannot accompany him because of a rare neurological disorder called Canavan that has left them weaker and more paralysed with each passing year.
This has forced Nazir, their father, to write to President Pranab Mukherjee seeking permission to end their lives. "I am tired of taking care of these kids, there's only so much I can do. The President should either allow me to euthanise 6 of my children or finance their treatment," the 42-year-old said.
Doctors say this disease can't be cured. "Canavan is a genetic disorder. It is a neurological disorder, it affects the white matter and it is progressive, and down the line in a few years' time the patients may be bedridden, have seizures and may not survive first decade or up until the teens. It is not curable, the drug tests are going on all in experimentation stage," said Dr Sunita Mahay, Centre of Medical genetics, Gangaram Hospital.
But the administration has promised help. "CMO officials did visit the family. They are getting their Aadhar card and BPL card made and will soon give them the required help," Rajesh Srivastava, ADM, Agra City, told NDTV.
Two of these children, Asim and Kashif, have been receiving physiotherapy treatment at a nearby clinic almost free of cost but that is not enough. Their doctor Pankaj Singh Rathore told NDTV, "Earlier they couldn't even hold a glass of water but they are much better now. I'm just a therapist they need assistance from an expert neurologist."
While the demand of these parents doesn't fall into the 2011 guidelines, their story and helplessness brings out the reality of a section of our population which cannot afford adequate health services.