In a landmark achievement in the realm of medical science, doctors at JK Lone Hospital in Jaipur have successfully administered gene therapy to a patient battling spinal muscular atrophy (SMA). On Tuesday at JK Lon Hospital in Jaipur, a 23-month-old child named Hridayansh received a Rs 17.50 crore injection. Administered by Dr. Priyanshu Mathur and his team from the Rare Disease Unit, the injection, Zolganesma, was imported from America specifically for the child’s treatment. Dr. Priyanshu Mathur stated that, Hridyansh would be kept under observation for next 24 hours. A team of JK Lone doctors comprised, Dr Priyanshu Mathur , Dr Gaytri, Dr Manisha Goyal, Dr Anand and Dr Lokesh Agrawal (Coordinator Raj-Sambal(Rare Diseases Crowdfunding Portal, Govt. of Rajasthan))
After the administration of the injection, the child looked absolutely normal. The prognosis is good said Dr Priyanshu. Further the child would be given certain oral medications for a few days. The doctors have advised the parents to take certain precautions for a few days and the impact of zolgensma injection would be evident in 7 to 10 days. Hridayansh’s family resides in Masari, Alwar. His father, Naresh Sharma, serves as an SHO at the Maniya (Dholpur) police station and was receiving treatment while staying in Jaipur.SMA, a rare genetic disorder characterized by the progressive degeneration of motor neurons, presents profound challenges for those affected. Hridyansh`s parents worked hard and tirelessly to raise funds through crowdfunding portal and got the gene therapy.
Hridayansh was diagnosed from a rare disease called Spinal Muscular Atrophy (SMA), which required injections to treat it. Hridayansh did not have any problem at the time of birth. He used to move his body well for 6 months. After about 6 months, when the family members tried to make him stand with some support, he could not stand.
The family resorted to crowdfunding efforts due to their son’s condition, which prevented him from crawling. They discovered that their son could potentially be treated with a Rs 17 crore injection, but lacked the necessary funds. A social media campaign was launched to raise money for the injections, with Indian cricketers Deepak Chahar and Sarfaraz Khan also appealing for assistance to save Hridayansh’s life. Deepak released a video expressing his support, stating that Hridayansh, the son of Rajasthan Police Inspector Naresh Sharma, was suffering from a serious and rare illness requiring costly treatment. Sarfaraz emphasized the urgency of the situation and urged people to contribute generously.
Bharatpur MP Ranjita Kohli penned a letter to the President, Prime Minister, and Union Home Minister seeking financial aid for the family. Similarly, Rajasthan government minister Jawahar Singh Bedham wrote to Chief Minister Bhajanlal Sharma requesting assistance in procuring the injections. MLA Dr. Ritu Banawat also appealed to Chief Minister Bhajanlal Sharma to allocate Rs 21 lakh from his MLA fund to support Hridayansh’s family.