Save Baby Ridhay in his Fight with Spinal Muscular Atrophy

Top 4 FAQs we have received -

1. This is such a big amount to fundraise! We appreciate your intention, but what happens if you don’t meet the goal?

Response: This is a significant amount, and we appreciate your intention to help. While we remain hopeful about reaching our fundraising goal, we understand the importance of addressing what happens in difficult circumstances. In the event that we don't need the funds anymore (if baby Ridhay's condition changes and he is no longer able to continue his treatment), all GoFundMe donations will be refunded to donors according to GoFundMe's terms and conditions - https://support.gofundme.com/hc/en-us/articles/203604214-Refunding-your-donors

2. Are you sure the gene therapy treatment even works?

Response: SMA is a rare genetic disease, which means we don't have the statistical certainty that comes with treatments for more common conditions where thousands of cases can be studied.

However, through our journey, we've connected with families whose children have received this gene therapy with positive outcomes. While each case is unique, these success stories give us hope for Ridhay's future.

Medical professionals have also seen promising results in clinical trials, which is why this treatment has been approved for use. We're working closely with Ridhay's medical team to make the most informed decisions possible for his care.

3. Are there 2 fundraisers for the same cause? We see 2 links on the internet.

Response: We are running a single fundraiser across 2 different platforms - GoFundMe and Impact Guru. Our total goal for Ridhay's treatment remains $1.1M USD collectively across both platforms.

We initially wanted to launch only on GoFundMe, but since many of our supporters in India cannot access GoFundMe due to regional restrictions, we added Impact Guru as a second platform. This allows donors to contribute through whichever platform is accessible to them, while all funds go toward the same treatment goal for Ridhay.

You can choose either platform based on your location and preference - both support the same cause.

4. How will the donations be used?

Response: Every dollar contributed to this fundraiser will go directly toward Ridhay's Zolgensma gene therapy treatment costs.

Funds will be transferred directly to the pharmaceutical company or their authorized subsidiary for the purchase of Zolgensma, as well as to the hospital for associated medical care.

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Donation Information:

Purpose: 5-month-old Ridhay lives in Mumbai, India, and is battling Spinal Muscular Atrophy Type 1 (SMA1), a rare genetic disease that progressively destroys motor neurons, restricting his limb movements, and can fatally damage his respiratory organs by his 2nd birthday. He currently requires a BiPAP machine to assist with breathing and is on expensive oral Risdiplam medication (approx. 2.4 lakh INR / $2800 USD per bottle) to temporarily slow the disease progression. His only hope for long-term survival is Zolgensma gene therapy treatment, which must be administered as soon as possible to prevent irreversible nerve damage.

Goal: $1.1 Million USD (9 crore INR)

How funds will be used: Zolgensma gene therapy treatment for 5-month-old Ridhay

Payment will be made directly to: The pharmaceutical company (Novartis) providing Zolgensma

Follow our journey: https://linktr.ee/ridhayfightssma

Fundraising Link on Impact Guru (predominantly for funds collected in India. Fundraising efforts will be stopped once the total fund of $1.1M USD is collected across both platforms): https://www.impactguru.com/fundraiser/help-ridhay-avinash-boliyar

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Dear Friends, Family, and Compassionate Strangers,

I am Matangi, baby Ridhay's aunt, writing to you today with a heart full of both hope and desperation. This fundraiser is for my 5-month-old nephew, who has recently been diagnosed with Spinal Muscular Atrophy Type 1 (SMA1), the most severe form of this rare genetic disease. Without urgent intervention, children with SMA Type 1 rarely live beyond their 2nd birthday.

The clock is ticking for our precious Ridhay, but there is hope—a revolutionary gene therapy called Zolgensma that could save his life. But this life-saving treatment comes with an overwhelming price tag of 16 crore INR (approx. $1.9M USD). We are actively working with government officials to secure a waiver for the 7 crore INR (approx. $820k USD) in GST taxes on this life-saving treatment. Through these efforts, we've been able to reduce our fundraising target to 9 crore INR (approx. $1.1M USD)—the actual cost of Ridhay's gene therapy treatment itself.

Who is Ridhay?

Ridhay was born on Oct 5, 2024, a bright-eyed baby who brought immeasurable joy to our family. For the first few months, everything seemed normal. He smiled, he cooed, he filled our lives with light and promise. But then, subtle signs began to emerge. His movements weren't progressing as expected. He struggled to lift his head during tummy time. What we initially dismissed as normal developmental variations turned into mounting concerns.

Six weeks ago, after multiple consultations and tests, we received the devastating diagnosis: Spinal Muscular Atrophy Type 1. In an instant, our world shattered. Our little boy, who looks so perfect on the outside, is battling an invisible enemy within—one that is progressively destroying the motor neurons that control his muscles.

Understanding SMA Type 1: A Merciless Disease

SMA is a rare genetic disorder caused by a missing or defective gene (SMN1) that is responsible for producing a protein essential for motor neuron survival. Without this protein, motor neurons die, leading to progressive muscle weakness and atrophy.

Type 1 is the most severe form of SMA, with symptoms typically appearing within the first six months of life. As the disease progresses, muscles weaken and waste away, movement becomes increasingly difficult, the ability to swallow and feed becomes compromised, and breathing becomes labored as respiratory muscles weaken, eventually leading to respiratory failure.

Each day that passes, Ridhay loses more motor neurons—losses that are irreversible. Once these nerve cells die, no amount of treatment can bring them back. This is why time is so critically important.

The Ray of Hope: Zolgensma

In the midst of this nightmare, there exists a beacon of hope: Zolgensma, a revolutionary gene therapy developed by Novartis. Unlike traditional treatments that only manage symptoms, Zolgensma addresses the genetic root cause of SMA by delivering a functional copy of the missing or defective SMN1 gene.

With a single-dose infusion, Zolgensma can halt the progression of the disease and potentially give Ridhay a chance at a normal life. Clinical trials have shown remarkable results, with children achieving developmental milestones that would have been impossible without treatment.

But this miracle comes with a staggering price tag: 16 crore INR (approximately $1.9M USD) including GST, making it one of the most expensive medical treatments in the world.

Our Journey So Far

The past six weeks since Ridhay's diagnosis have been the most challenging period our family has ever faced. We've moved between shock, denial, grief, and finally, determination.

Currently, Ridhay still has some movement in his limbs and can breathe with the help of a BiPAP machine at night, but we know this could change rapidly. We have also started to administer an oral medication, Risdiplam, which costs approx. 2.4 lakh INR (approx. $2800 USD) per bottle under The Blue Tree Program, to slow the progression of the deadly disease. Each day, we notice subtle changes—movements that were possible yesterday becoming more difficult today. We are in a desperate race against time.

We've consulted with specialists across Mumbai and Bangalore. The consensus is clear: Zolgensma is Ridhay's best hope, and the sooner he receives it, the better his chances. But the astronomical cost puts it far beyond our family's financial means.

Why We Need Your Help

Our family has already exhausted our savings for the oral Risdiplam medication, BiPAP machine, and consultations with multiple medical specialists (pediatric neurologist, pulmonologist, sleep specialist, nutritionist to name a few). We've approached banks for loans, reached out to government agencies for assistance, and explored every possible option. But the gap between what we've been able to gather and what we need remains vast.

This is where we turn to you—our extended family, friends, colleagues, and the global community of compassionate individuals. We believe in the collective power of human kindness. Even the smallest contribution, when combined with others, can help us reach our goal.

Our days are now structured around Ridhay's care. Every three hours, we perform gentle physiotherapy exercises to maintain what muscle function he has. We position and reposition him to prevent pressure sores. We monitor his breathing patterns obsessively, watching for any signs of respiratory distress.

As parents, we haven't had a full night's sleep since the diagnosis. We take turns keeping vigil, terrified of missing a moment when he might need help. Our lives have been completely upended—careers put on hold, savings depleted, and emotional reserves stretched to breaking point.

Yet in the midst of this nightmare, there are moments of profound beauty. When Ridhay recognizes a family member and his face lights up. When he manages to grasp a finger, however weakly, and holds on with determination. These precious moments remind us what we're fighting for—not just more time, but quality time. A chance for Ridhay to experience the fullness of life that every child deserves.

How You Can Help Beyond Donating

$1.1M USD seems like an impossible sum for a single family to raise, but every contribution, regardless of size, brings us closer to our goal.

While financial contributions are our most urgent need, there are other meaningful ways you can support our cause:

A Promise of Transparency

We commit to complete transparency throughout this fundraising journey. We will provide regular updates on Ridhay's condition, documentation of all medical expenses, verification of fund transfers to medical providers, and acknowledgment of all contributions.

In Closing: A Plea From the Heart

As we write this post, Ridhay's parents are sitting beside his crib, watching his chest rise and fall with each precious breath. His eyes follow them with curiosity and trust—trust that the adults in his life will protect him and fight for him.

We make this promise to him daily: We will not give up. We will find a way.

Today, we extend this promise to you as well. We will not waste a single dollar or minute in our quest to save Ridhay. We will honor your generosity with unwavering dedication to his treatment and recovery.

But we cannot fulfill these promises alone. We need your help—your generosity, your compassion, your belief in the value of one small life that has only just begun.

Please, donate what you can. Share our story far and wide.

From the depths of our hearts, thank you for reading our story. Thank you for caring. And thank you for considering being part of Ridhay's miracle.

With profound gratitude and hope,

Avinash Narayan & Jasmeeta Setpal (Ridhay's Parents) & Matangi (Ridhay's aunt)