Aarav Thakur, who will turn two on July 22, was diagnosed with Spinal Muscular Atrophy (SMA) Type II (Express photo)A toddler from Ludhiana, battling a rare genetic disorder that has left him unable to walk or sit without support, has been prescribed a life-saving injection available only in the US and costing around Rs 9 crore. The family has appealed for financial assistance, saying the treatment is far beyond their means.Aarav Thakur, who will turn two on July 22, was diagnosed with Spinal Muscular Atrophy (SMA) Type II, a rare and progressive genetic disorder that affects the nerve cells controlling muscle movement. Children with SMA gradually lose the ability to sit, stand, walk, move independently and swallow properly, and in severe cases, even breathe without support. Without timely treatment, the loss of muscle function can become permanent.According to a prescription issued by Dr Renu Suthar of the Department of Pediatrics at PGIMER, Chandigarh, Aarav urgently requires Zolgensma (Onasemnogene abeparvovec), a single-dose intravenous gene therapy. The global cost of the treatment is estimated at 1.7 million USD (around Rs 16 crore).“However, since we are raising funds through a registered crowdfunding platform and not through our personal bank account, the injection will cost us around Rs 9 crore after tax exemptions and other concessions. It will be imported from the US. My child is racing against time because the injection should ideally be administered before he turns two. He will turn two on July 22, leaving us with just two weeks,” Radhika Thakur, Aarav’s mother, told The Indian Express.A resident of Subhash Nagar in Ludhiana, Radhika said her husband, Gaurav Thakur, works as an engineer in Dubai.“My baby was born in Dubai, but we soon started noticing problems with his physical development. He could not stand, stopped crawling, and now he cannot even sit without support. His developmental milestones kept getting delayed. At first, we thought some children simply take longer to walk, but eventually we realised something was seriously wrong. Genetic tests confirmed SMA Type II. I left my job in Dubai, returned to India and began his treatment at PGIMER Chandigarh,” she said.“No matter how hard we try, even if we sell everything we own, we cannot arrange Rs 9 crore. We appeal to people to help our child in whatever way they can. Even a small contribution will keep our hopes alive,” Radhika said, adding that Aarav is currently on oral medication but requires the gene therapy at the earliest.Story continues below this ad“Zolgensma is generally recommended before a child turns two years old, and Aarav is already 23 months old. This leaves us with only a very small window of opportunity. Every passing day matters. The treatment costs more than Rs 9 crore, making it one of the most expensive medicines in the world. This amount is far beyond the financial means of an ordinary family,” she said.“My child hasn’t given up. Whenever he falls after I make him sit, he tries to sit up again. He even tries to jump despite not being able to. He is so talkative. If he hasn’t given up, how can we?” Radhika said.Divya Goyal is a Principal Correspondent at The Indian Express, based in Ludhiana (Punjab). She is widely recognized for her human-interest storytelling and in-depth investigative reporting on social and political issues in the region. Professional Profile Experience: With over 13 years in journalism, she joined The Indian Express in 2012. She previously worked with Hindustan Times. Education: A gold medalist in English Journalism from the Indian Institute of Mass Communication (IIMC), Delhi. Core Beats: She covers a diverse range of subjects, including gender issues, education, the Sikh diaspora, heritage, and the legacy of the Partition. She has also reported on minority communities in Pakistan and Afghanistan. Awards and Recognition Divya has earned significant acclaim for her sensitivity toward gender and social disparities: Laadli Media Award (2020): For her investigative report "Punjab: The Invisible Drug Addicts," which exposed the gender disparity in treating women addicts. Laadli Media Award (2023): For a ground report on the struggles of two girls who had to ride a boat to reach their school in a border village of Punjab. Signature Style Divya is known for "humanizing the news." Rather than just reporting on policy, she often focuses on the individuals affected by it—such as students dealing with exam stress, farmers struggling with diversification, or families impacted by crime. Her work often bridges the gap between West (Pakistan) and East (India) Punjab, exploring shared heritage and common struggles. X (Twitter): @DivyaGoyal_ ... Read MoreStay updated with the latest - Click here to follow us on Instagram