iansu
Jaipur, November 22nd
Tanishq, a 2-year-old toddler from Rajasthan, suffers from a rare spinal muscular atrophy type 1 disorder and is currently fighting for his life. Initial hopes of survival also dwindled after his father ran from pillar to pillar and gave him injections, which cost him Rs 1.6 crore and became ineffective after the child turned two years old.
His parents are now begging the state government to help him get oral medication, as the jab only applies to children under the age of two.
The price of the drug called Risdiplam is around Rs 7.2 lakh. However, the price varies depending on the weight of the child.
According to his father, Tanishuk weighs around 7 kg, so medicine costs around 300-32 lakh rupees, which is the only option to save the child.
He further claimed that no medicine was available here, despite 15 other children suffering from the same disorder.
He added that only one child has been given the drug.
Tanishq is getting smaller and weaker by the day. Tanishuk has been sent from Nadwa village in Nagaur district to Jaipur for treatment as he continues to be ill.
When Tanishuk’s father earlier spoke to Jaipur’s JK Loan Hospital, doctors said they had run out of money.
“My child could have gotten the medicine two years ago if the government wanted it, but it turned a blind eye to our appeals…” Tanishku’s father calls from the prime minister’s office Upon receiving it, a doctor at JK Loan Hospital said he would give the child oral medicine worth 300,000 rupees within two years, but nothing has happened yet.
Meanwhile, parents of other children suffering from rare diseases handed a memorandum to hospital director RL Gupta.
According to Gupta, 14 children are being treated for rare diseases, which the state government has spent 10 million rupees on, while crowdfunding has raised only 1.3 million rupees.
Doctors are demanding more crowdfunding funding. I have also written to the government about this.
Gupta also called on pharmaceutical companies to use their CSR funds to lower margin prices on medicines in hospitals due to high patient volumes.
Overall, 6% of medicines are supplied by the central government.
#Rajasthan
