“We knew that our lives were going to change. We were ready for a new chapter of life: parenthood. It was 11th August 2022, and we felt the luckiest holding our little miracle in our hands.” - Saurav and Savitri (parents)
We named her Saachi because she was our truth, our prayer answered. In that moment, the world felt perfect. Her tiny fingers wrapped around ours, and we promised her a life filled with love, laughter, and endless possibilities. Like every parent, we dreamed of her first steps, her first day of school, and her running towards us with open arms.
But life had other plans.
As months passed, we noticed something unusual in Saachi. She struggled to sit without support. Standing and walking remained distant dreams. Each doctor visit came with hope, followed by fear we couldn’t explain. We told ourselves she would catch up, that every child grows at their own pace. As parents, we held on to denial because the truth felt too heavy.
In September 2025, our world shattered when we heard words we never imagined would define our daughter’s life — Spinal Muscular Atrophy (SMA). A rare genetic neuromuscular condition. Progressive. Life-altering. Incurable without timely intervention.
We remember sitting in silence, unable to process what the doctors were saying. How could our little girl, who smiles so brightly and laughs so freely, be fighting something so cruel? SMA weakens her muscles day by day. It has already taken away her ability to stand or walk independently. Simple movements that most children do effortlessly require immense effort, therapy, and support for Saachi.
Today, she is stable, but stability comes at a cost. Constant physiotherapy. Continuous medical monitoring. Daily care that never pauses, not even for a moment. She is currently on Risdiplam (Evrysdi), which helps slow the condition, but it is not a cure. Without definitive treatment, SMA will continue to hamper her strength, her independence, and her future if not cured on time.
Doctors have told us there is hope, a one-time gene therapy called Vesemnogene, which can stop the progression of SMA. It is time-sensitive. The younger the child, the better the outcome. Every passing day risks irreversible muscle loss. The treatment is planned for mid to end February, and the clock is ticking faster than our hearts can bear.
The cost, however, is unimaginable — ₹1.5 to ₹1.8 crore. We are choosing the lower-cost Vesemnogene because the ₹18 crore Zolgensma is far beyond our capacity. Now we are standing at the stage where we need you. Your kindness is our only chance to fight for our baby girl.
Saachi doesn’t understand why her legs don’t move like other children’s. She doesn’t know the word “SMA.” She only knows that she wants to play, laugh, and explore the world around her. As her parents, it breaks us every day that love alone is not enough to save her — but with your help, it can be.
Please help us rewrite Saachi’s story. Help us give our little miracle the life she deserves.
Here’s how you can make your contributions to Saachi’s treatment:
- Visit ImpactGuru and click on the button “Donate Now”.
- Share our little angel’s story with as many people as you can to help her receive more support.
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সাচির চিকিৎসায় আপনি কীভাবে আপনার অবদান রাখতে পারেন তা এখানে দেওয়া হল:
ইমপ্যাক্টগুরুতে যান এবং "এখনই দান করুন" বোতামে ক্লিক করুন।
আমাদের ছোট্ট দেবদূতের গল্প যতটা সম্ভব মানুষের সাথে শেয়ার করুন যাতে তাকে আরও বেশি সহায়তা পাওয়া যায়।
The goal amount of the campaign may be higher than the attached estimates to address and aid the post-hospitalization expenses/contingencies including but not limited to prolonged medication, diagnostics, rehabilitation therapies, and follow-up doctor visits/consultations which vary from disease to disease.