Jaipur: Two-year-old Tanishk, a resident of Nagaur, who was diagnosed with spinal muscular atrophy (SMA) Type-1 at JK Lon Hospital here when he was a 10-month-old, passed away in Nagaur on Monday. He needed Rs 16-crore for an injection, which is imported from the US.
The injection could have saved his life. His parents, relatives and friends tried their best in the past 12-15 months to collect the money from different sources and sought help from the Rajasthan high court and from the Centre and state governments, but all their efforts went in vain. Even Nagaur MP Hanuman Beniwal had raised the issue in Parliament, but nothing could be done. A lot of such children are listed on the state government’s website are waiting for treatment while the government is appealing for crowdfunding.
Two days ago, Tanishk was rushed to JK Lon Hospital in Jaipur for pneumonia. His family, who rushed from pillar to post, were inconsolable on his death. “We tried every possible way to save his life. We met politicians in state and central levels. We also appealed to the HC. Despite efforts, my son did not get the medicine,” said Shaitan Singh, Tanishk’s father, an advocate in Nagaur.
Shaitan Singh’s family and friends also put efforts for crowdfunding, but they could not collect enough money. “He required one shot of ‘Zolgensma injection’ which is a one-time gene therapy. This therapy will change the genetic composition and synthesise SMN protein. In SMA, the body does not produce SMN protein, which causes the disease. The cost of the injection is Rs 16 crore. If the injection is not given, then there is a medicine which cost Rs 30 lakh annually for lifetime. Both treatments are quite expensive. We tried for crowdfunding but only managed to collect Rs 2 lakh,” said Singh.
Singh said, “If donors want their money back, it will be done, and the money could be transferred to other needy person. We will not keep the money.”On June 16, 2021, Noor Fatima, a seven-month-old baby from Bikaner who was suffering from the same disease, died after the family could not arrange the amount. For such children, the only option for the family is crowdfunding since the injection is extremely expensive. His sibling had the same disease and died at the age of 8 months, in 2019.
The injection could have saved his life. His parents, relatives and friends tried their best in the past 12-15 months to collect the money from different sources and sought help from the Rajasthan high court and from the Centre and state governments, but all their efforts went in vain. Even Nagaur MP Hanuman Beniwal had raised the issue in Parliament, but nothing could be done. A lot of such children are listed on the state government’s website are waiting for treatment while the government is appealing for crowdfunding.
Two days ago, Tanishk was rushed to JK Lon Hospital in Jaipur for pneumonia. His family, who rushed from pillar to post, were inconsolable on his death. “We tried every possible way to save his life. We met politicians in state and central levels. We also appealed to the HC. Despite efforts, my son did not get the medicine,” said Shaitan Singh, Tanishk’s father, an advocate in Nagaur.
Shaitan Singh’s family and friends also put efforts for crowdfunding, but they could not collect enough money. “He required one shot of ‘Zolgensma injection’ which is a one-time gene therapy. This therapy will change the genetic composition and synthesise SMN protein. In SMA, the body does not produce SMN protein, which causes the disease. The cost of the injection is Rs 16 crore. If the injection is not given, then there is a medicine which cost Rs 30 lakh annually for lifetime. Both treatments are quite expensive. We tried for crowdfunding but only managed to collect Rs 2 lakh,” said Singh.
Singh said, “If donors want their money back, it will be done, and the money could be transferred to other needy person. We will not keep the money.”On June 16, 2021, Noor Fatima, a seven-month-old baby from Bikaner who was suffering from the same disease, died after the family could not arrange the amount. For such children, the only option for the family is crowdfunding since the injection is extremely expensive. His sibling had the same disease and died at the age of 8 months, in 2019.
