Jaipur (Rajasthan): A two-year-old child Tanishq suffering from a rare disease died on Monday in the absence of medical aid. The child was suffering from spinal muscular atrophy, a rare ailment. The deceased child belonged to a village in the Nagaur district of Rajasthan. Muscular atrophy, a rare disease, leads to the degeneration of muscle tissue. People may lose 20 to 40 per cent of their muscle strength as their age progresses.
The child breathed his last while undergoing treatment at a hospital in Parbatsar town in Rajasthan's Nagaur district. Tanishq was suffering from spinal muscular atrophy since his birth. The parent's financial condition was not sound to meet medical expenses. The cost of the injection to treat the ailment was Rs 16 crore. The non-availability of funds became a hindrance to the child's treatment.
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A pall of gloom descended on Nadwa village in the district after the child's demise. In the past, a child Jameel of Churu district was also suffering from a rare disease. The relatives of Jameel had filed a petition in the High Court. As per the directive of the High Court, the Rajasthan government has set up Sambal portal for providing medical assistance to the needy. Thereafter, the treatment of the ailing child began at JK Lone Hospital.
Earlier, MP Hanuman Beniwal from Nagaur, Rajasthan, had raised the issue in the Lok Sabha. Beniwal had said in the House that the ailing child belonged to his parliamentary constituency and he was suffering from a rare disease. The MP had urged the state government to provide free treatment to the ailing child.
