Jaipur: A two-year-old boy named Tanishq, who was suffering from a rare disease called spinal muscular atrophy, died after his family’s every effort to procure an injection costing Rs 16 crore that is required to treat the ailment failed to yield a positive result.
Tanishq’s father Shaitan Singh had appealed to the government to make arrangements for the injection at its own level for his child. However, nothing happened in this regard.
As soon as the news of Tanishq’s death came, a pal of gloom descended over Nadwa village in Nagaur district.
Waiting for the injection, Tanishq died during treatment at the JK Lone Hospital in Jaipur.
Incidentally, Rashtriya Loktantrik Party (RLP) MP Hanuman Beniwal had sought help for Tanishq from the Central government last year.
Tanishq was waiting for the injection for a year-and-a-half. When he was nine-month old, the doctors in Jaipur had asked his family members to arrange an injection that cost Rs 16 crore.
To arrange such a huge amount, his relatives had appealed to both the state government and the Centre so that the toddler could be saved.
A few months back, a court had ordered that every ill person should be provided medicine, but Tanishq’s case once again shows that that is not the case in Rajasthan.
The family members of Jameel, a child in Churu district who was suffering from a rare disease, had filed a petition in the Rajasthan High Court, after which the Sambal portal was launched by the state government, and Jameel’s interim treatment was done on the orders of the high court.
After the ruling in Jameel’s petition, the Central government had made Jodhpur AIIMS the only centre of excellence for rare diseases in Rajasthan, in which any patient suffering from a rare disease can get treated.
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