Ridhay's parents received the devastating diagnosis just months ago, and they’ve since been living each day with a renewed sense of urgency.
Ridhay
Seven-month-old Ridhay, a cheerful infant with bright eyes and an infectious smile, looks like any other baby his age. But behind his smiles lies a heartbreaking truth: he has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare and life-threatening genetic condition that robs children of the ability to move, swallow, or even breathe independently.
Ridhay's parents received the devastating diagnosis just months ago, and they’ve since been living each day with a renewed sense of urgency. SMA Type 1 is the most severe form of the disease, typically diagnosed in infants under six months old. Without treatment, most children with this condition do not survive past their second birthday.
But there is hope-Zolgensma, a revolutionary gene therapy that has been called “the most expensive drug in the world,” offers the possibility of a cure. The one-time infusion delivers a functional copy of the missing SMN1 gene, halting the progression of SMA and potentially giving children like Ridhay a chance at a normal life.
The Challenge: ₹9 Crore in Time
The cost of this life-saving therapy is staggering: approximately ₹16 crore at market price. However, with the help of global access programs and negotiations, the family is now working to raise ₹9 crore to afford the treatment before Ridhay turns two years old-the critical window during which the therapy is most effective.
“Every day is crucial. The earlier the treatment, the better the outcome,” says Ridhay’s father, visibly emotional. “We are doing everything in our power to save our child, but we can’t do it alone.”
Turning to the Community
The family has launched a crowdfunding campaign and is appealing to kind-hearted individuals, corporates, and institutions for support. Through social media, public appeals from popular figures such as Sonu Sood, Hussain Mansuri and Sanjay Dutt, and tireless campaigning, they’ve already managed to raise 65% of the funds-but time is running out.
"We’ve sold valuables, taken loans, and reached out to everyone we know. But ₹9 crore is beyond what any average family can raise on their own," shares Ridhay’s mother. "We're now relying on the generosity of strangers."
Their online campaign includes videos of Ridhay’s playful moments, alongside medical reports and doctor testimonials explaining the urgency of the treatment. Each share, each donation, brings them closer to their goal-and gives Ridhay another breath, another chance.
Understanding SMA Type 1
Spinal Muscular Atrophy is a rare neuromuscular disorder caused by the absence of a critical gene called SMN1, which is responsible for the production of a protein essential for motor neuron survival. In SMA Type 1, symptoms often begin in the first few months of life and can progress rapidly, leading to muscle wasting, respiratory failure, and death if untreated.
India has seen a rising number of SMA cases in recent years, but access to treatments like Zolgensma remains limited due to the prohibitive cost and the lack of universal healthcare coverage for such rare conditions.
How You Can Help
Ridhay’s story is not just about a disease-it’s about resilience, hope, and the power of collective compassion. The family is appealing for donations, media visibility, and partnerships with NGOs or healthcare advocates who can help amplify their plea.
To support Ridhay’s treatment fund, visit: https://www.impactguru.com/fundraiser/help-ridhay-avinash-boliyar
To support Ridhay’s campaign on social media platforms, visit:
https://linktr.ee/ridhayfightssma
Every rupee counts. Even a small contribution can help bring this little fighter one step closer to the life he deserves.
"We believe in miracles," his parents say. “And we believe people will come forward to be part of ours.”
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