Jaipur: Every time we think that humanity is on the brink of extinction, there pops a story of excellent resilience, love and hope, giving us the courage to keep going! In May, in a remarkable display of solidarity, a campaign was initiated in Jaipur to help 22-month-old Hridyansh to emerge victorious in his battle against Spinal Muscular Atrophy (SMA) Type 2.
The campaign managed to collect ₹9 crore within just three months helping Hridyansh receive the world's most expensive injection, the Zolgensma injection. It was brought from the US to Jaipur and cost a whopping Rs 17 crores. Yet again in a show of communal harmony and love, Jaipur has stepped up to help another child in his battle against SMA.
Two-year-old Arjun Jangid is also in dire need of the Zolgensma injection but cannot pay such a hefty amount for the treatment. To save the child's life, the the drug company manufacturing the injection has halved its price from Rs 17 crore to Rs 8.5 crore.
Dr Priyanshu Mathur, Pediatric Rare Disease Specialist, Consultant Metabolic Genetic Disorders, JK Lone Hospital said that Arjun's parents were shifting the child to multiple hospitals for treatment but without proper cure. "When the child was brought to JK Lone Hospital, we diagnosed him with the disease. Spinal muscular atrophy is a genetic disease which affects the spinal cord and nerves," he added.
Arjun's father said that about Rs 7 crore 65 lakh has been amassed through crowd funding so far. "We are yet to collect the remaining Rs 85 lakh and then we can buy the injection. Vipra Sena chief Sunil Tiwari has also appealed to the people to help us with Arjun's treatment." he added.
Mother Poonam Jangid, working as a laboratory assistant in the education department said that Education Minister, Madan Dilawar, Education Secretary, Krishna Kunal, Director of Secondary Education, Ashish Modi raised funds worth Rs 1.50 crores through the employees and teachers.
According to media sources, approximately 1 in 10,000 live-born babies are affected by spinal muscular atrophy, despite the fact that official statistics on the disease's prevalence among Indians are lacking. A study found that one in 50 people in the West carries the defective gene that causes SMA compared to one in 38 Indians.
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