Infant son needs Rs16cr jab against rare genetic disorder, labourer pleads for aid
Chandrapur: Ayush was born on January 26, 2025, at the govt hospital in Chandrapur. For the first few days, nothing seemed unusual. But when he showed no signs of movement even after a fortnight, his parents grew concerned.
Repeated visits to local doctors and persistent episodes of pneumonia finally led to specialist consultations.
Tests conducted in Bengaluru confirmed that Ayush was suffering from spinal muscular atrophy (SMA), a rare and life-threatening genetic disorder that affects one in several lakh children. In SMA, muscles progressively weaken due to the loss of motor neurons.
Ayush's father Arjun Gajar, a daily wage worker from Gawli Mohalla in Bhiwapur ward, said medical experts have suggested one-time gene therapy injection, Zolgensma — which costs Rs16 crore — to save Ayush.
As per medical experts, Zolgensma has proven effective in several similar cases across the world. The injection must be administered before the child turns 16 months old. "Ayush is now four-month-old. If given in time, the injection could halt the progression of the disease and potentially save his life. Without it, children with SMA rarely live beyond the age of two. This injection is our only hope," said Arjun while fighting back tears and making a plea for financial help during a press conference here on Thursday.
Arjun said the diagnosis has left his family shattered. "My son is slowly losing control over his body. He can neither move his hands or legs nor hold his head. Even his cries have gone silent," he said.
As per Arjun, doctors at NSH Critical Care Hospital in Nagpur emphasised the urgency of starting gene therapy. Dr Umesh Biyani of NHS Critical Care Hospital, Nagpur, told TOI that the boy is suffering from SMA and stated that administering Zolgensma, a gene therapy injection, could significantly aid in his recovery.
"I have knocked every door I could. I have submitted petitions to elected representatives and reached out to social organisations and charitable foundations. I have faith that people will come forward to help save my son's life," Arjun said.
Arjun said he has also submitted formal appeals to local MLAs, including Sudhir Mungantiwar and Kishore Jorgewar, seeking intervention for financial support through govt or CSR channels.
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