Mumbai: After six months of crowdfunding, two-year-old Khushi from Panvel received the life-saving Zolgensma gene therapy on April 8 at a Mumbai hospital. She had been diagnosed with Spinal Muscular Atrophy (SMA) Type 2 and urgently needed the treatment to halt the progression of the disease.
Therapy Costs Rs 16 Crore With Upfront Payment of Rs 9.5 Crore
The therapy costs Rs 16 crore, with an upfront payment of Rs 9.5 crore—an amount far beyond her family’s means. However, through crowdfunding efforts and support from relatives, her parents were able to raise the required funds.
For the best outcome, the injection must be administered before the child turns two, making timely access to the treatment critical.
Father Samit Yadav Says Khushi Is Stable and Active
Samit Yadav, Khushi’s father, said she was admitted to P.D. Hinduja Hospital, Mumbai, on April 7, 2026, and successfully received the life-saving Zolgensma gene therapy on April 8, 2026. “She is stable and active. Side effects are being managed under strict medical supervision. The next three months are very crucial. She will remain in isolation, with regular tests and monitoring, as her body is currently sensitive and inflamed,” said Yadav, adding that he is deeply grateful for all the love, support, and contributions. “You have given Khushi a new lease on life,” he said.
SMA is a rare genetic disorder caused by the deletion of the SMN1 gene, which is crucial for the survival of motor neurons. Without this gene, these neurons gradually die, leading to progressive loss of muscle control—starting from the legs and waist, then the hands, and eventually affecting the spine and respiratory system. The brain remains unaffected, but the disease severely limits mobility and independence.
SMA Is Rare Genetic Disorder
Until a few years ago, SMA had no cure, and parents were often advised to take their children home and make the most of the limited time together. However, in recent years, medical science has made a breakthrough. Novartis Pharmaceuticals has developed a one-time gene therapy, Zolgensma, which can potentially halt the progression of SMA and give children like Khushi a chance at a normal life.
In October 2025, an official letter from the consultant pediatric neurologist at P.D. Hinduja Hospital, Mumbai, confirmed that Khushi required the life-saving injection Zolgensma. The medicine is currently not available in India and must be imported from the United States.
Khushi’s condition was rapidly affecting her ability to sit, crawl, and breathe independently. Early intervention was critical, as this life-saving therapy had to be administered before the age of two.
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