Mohd Nazir, who has eight children, said that he wanted euthanasia for six of his kids — five sons and one daughter — who are suffering from a rare neurological disorder which has almost paralysed their lower body and affected their voice and vision as well. Nazir, who is a resident of Bada Ghalibpura, while submitting his letter to the district administration, requested that it may also be forwarded to the president, Pranab Mukherjee. “It’s after exhausting all options that I am forced to take this decision. I simply cannot bear to see my children suffering since I am powerless to help them,” the distraught father told TOI.
A visit to Nazir’s house reveals the predicament that the family is in. Eight-year-old twins Taiba, a girl, and Aawan, a boy, their faces pale and wracked with pain, are sitting in a corner of the room while their other siblings lie around on the bed. Tabassum, their sobbing mother, says that with each passing day, the children’s pain seemed to be increasing. “That’s why my husband and I decided that we have to put a stone on our hearts and end their suffering.”
Pankaj Singh Rathore, a physiotherapist who is treating the kids says that the children have been treated at AIIMS in New Delhi where the tests conducted by doctors revealed that their bodies were getting weaker as their age progressed. “The kids seem to be suffering from a type of brain disorder known as ‘tropical spastic paraplegia‘ which is incurable. The disease occurs in one among a lakh families and is typical of the Indian subcontinent,” Dr PK Maheshwari, head of the neurology department of SN Medical College, told TOI. “I have come across a dozen of such cases till now in which all the siblings develop a similar disorder The life span of such kids is a maximum of 25 to 30 years but it can be extended a little with physiotherapy,” he added.
However, Dr Mansoor Alam of the Institute for Child Development, a Delhi-based NGO that works with children with neuro-developmental disorders and neuro-muscular diseases, says that the diagnosis should be confirmed from multiple sources before arriving at a conclusion on the children’s longevity.
The family should not feel despondent and contemplate extreme steps. Proper medical management can ensure that the kids are able to lead dignified lives. There are a number of organizations like ours which can guide the family in this regard.“
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