Understanding SMA This #SMAAwarenessMonth | The Cost, The Struggle, The Fight for Life

“They say her life is worth crores,

But to me, she’s priceless from the day she was born…”

This is About the ₹17+ Crore Injection that Could Save Someone’s Life…

Imagining a medical crisis is enough to send a chill down anyone’s spine. But what if, in that moment of fear, someone mentions that the treatment our loved ones need would cost not thousands or lakhs, but crores?

It feels unimaginable, almost unreal. Yet for families battling Spinal Muscular Atrophy (SMA), this is the heartbreaking reality they face.

 
Source: Canva Pro

This August, in observance of SMA Awareness Month, ImpactGuru presents this blog to highlight the experiences of children with Spinal Muscular Atrophy, the soaring costs of their treatments, and the ongoing challenges faced by families. Additionally, let’s also explore how crowdfunding can bring patients closer to life-saving care.

What Happens to a Child with SMA?

Spinal Muscular Atrophy, or SMA, is a rare genetic condition that slowly steals the strength from a child’s muscles. 

Imagine a baby who should be learning to sit, crawl, or even take their first steps, instead, gradually losing the ability to move. To be more precise, it’s not just about body movement but a child’s ability to even swallow food safely, to breathe without machines, and to live without constant medical support. 

Source: Canva Pro

To better understand this struggle, let’s go through the next section of the blog in depth, focusing on the types of SMA and its impact on a child's life and their family's journey.

The Many Faces of SMA: Types and Timelines

SMA Type 1: It’s the most severe. Symptoms show up before a baby turns six months old. These little warriors often face life-threatening challenges early on, struggling for every breath.

SMA Type 2: Symptoms appear between six and eighteen months. Children may sit, but often cannot walk unaided. Every day becomes a battle to maintain their body and its movements.

SMA Type 3: Symptoms begin after eighteen months and progress more slowly. Many children can walk for some time, but eventually face increasing weakness.

SMA Type 4: Rare and adult-onset, this form progresses more gently but still impacts the quality of life.

Each type of SMA carries its own heartbreak, and the ticking clock serves as a constant reminder of the fear that parents cannot escape. Every moment turns into a high-stakes decision in their child’s fight for survival. And, each diagnosis presents gut-wrenching choices and the heavy burden of affording treatments that could mean the difference between life and loss.

Also read: Spinal Muscular Atrophy (SMA) 

Understanding SMA Treatment Costs
ImpactGuru has experienced the significant struggles that families face in affording treatments for their children. Based on that, below is an overview of the treatment landscape, highlighting the challenges these families had encountered/ may encounter:

Zolgensma

• One-time gene therapy before age 2

• Costs approximately ₹16–₹18 crore

Spinraza

• Multiple doses every year for a lifetime

• Costs approximately ₹6–₹7 lakh per dose

Evrysdi

• Daily oral medication

• High monthly cost

• Ongoing for life

  
  

Source: Canva Pro

Additional expenses include:

→ Hospital stays and ventilator support

→ Physiotherapy and mobility aids

→ Travel to specialised treatment centres

For most of the families, these numbers feel crushingly impossible. Yet ImpactGuru has witnessed multiple times how crowdfunding has made a way through dealing with such expensive treatments without much delay, giving children a real chance at life.

One such extraordinary example is of Baby Aasmika Das, diagnosed with Spinal Muscular Atrophy, whose journey highlights both the severity of the illness and the possibilities of treatment.

The Power of 5.29 Lakh Donors Helped Save Aasmika
Baby Aasmika Das’s journey stands as a moving testament to what humanity can achieve together. Diagnosed with SMA Type 1, she was able to undergo Zolgensma gene therapy at a leading hospital in Kolkata, made possible by the unwavering support of 5.29 lakh donors who helped her family raise INR 8.41 crore on our platform, ImpactGuru— marking the highest number of donors ever recorded for a single case.

Aasmika’s possibility of treatment felt out of reach for the family because of its astronomical cost. Yet, through countless micro-donations, the power of social sharing, and the kindness of people across India and the world, her family’s dream of affording Zolgensma became possible.

Aasmika’s story reaffirms ImpactGuru’s mission to make healthcare accessible to all. For Aasmika’s case (and every case beyond), ImpactGuru remains deeply grateful: both to the thousands of families who place their trust in us, and to the countless donors whose generosity helps rewrite stories of struggle into stories of survival.

Read more: Baby Aasmika Undergoes Lifesaving Zolgensma Gene Therapy After Raising INR 8.41 Cr on Impact Guru with Support from 5.29 Lakh Donors 

ImpactGuru’s Message on SMA Awareness Month

This SMA Awareness Month, ImpactGuru reaffirms its commitment to stand beside every family fighting this rare and devastating disease.

  Source: Canva Pro

So, if you’re a parent navigating a similar battle, know that you are not alone. Start a fundraiser today because in SMA, every moment truly matters. 

And if you’re someone who wishes to make a difference, explore the ongoing SMA fundraisers on our website, share them within your circles, or lend your support in whatever way you can. 

Together, as a community of givers, believers, and changemakers, ImpactGuru tries to ensure that no one’s life is cut short due to a lack of resources. Let this month be about not just awareness but action, compassion, and a collective promise that every child deserves a fighting chance against SMA.