Help 22-Month-Old Chirag Fight Spinal Muscular Atrophy (SMA Type 2)
Hello,
My name is Sai Bhargavi, and I am the mother of my little son Chirag, who is just 22 months old. At an age when children should be learning to walk, talk, and play freely, my son is fighting a rare, life-threatening genetic disorder called Spinal Muscular Atrophy (SMA Type 2).
As parents, watching our child suffer silently every day is the greatest pain imaginable. Chirag is slowly losing his muscle strength, not because of anything we did wrong, but because of a genetic condition he was born with.
What is Spinal Muscular Atrophy (SMA Type 2)?
Spinal Muscular Atrophy (SMA) is a rare genetic neuromuscular disease that affects the nerve cells in the spinal cord responsible for muscle movement.
Children with SMA lack a crucial gene (called SMN1), which leads to:
- Progressive muscle weakness
- Difficulty sitting, standing, and walking
- Problems with swallowing and breathing over time
SMA Type 2 usually appears in early childhood. Children may be able to sit but gradually lose muscle strength as the disease progresses. Without timely treatment, SMA can become life-limiting.
The Only Hope: Vesemnogene Gene Therapy
Doctors have informed us that Chirag’s only chance to stop the progression of SMA is a one-time gene therapy called Vesemnogene.
How Vesemnogene Works
Vesemnogene is a gene replacement therapy. It works by delivering a healthy copy of the missing SMN1 gene into the child’s body. Once administered, the body can start producing the essential protein needed for muscle function.
✔ It is a single-dose, one-time treatment
✔ It helps halt further muscle damage
✔ Early administration gives the child a chance at a better, more independent life
Time is extremely critical—every day of delay causes irreversible muscle loss.
Cost of the Treatment
The cost of Vesemnogene gene therapy is approximately ₹ 2 crores ( USD 1,25,000).
This is one of the most expensive life-saving treatments in the world, and as a middle-class family, we can't arrange this amount on our own.
Why We Are Asking for Your Help
As parents, we are doing everything in our power to save our son—but we cannot do this alone. Money should never decide whether a child lives or suffers, yet today it stands between Chirag and his chance at life.
We are reaching out with hope, faith, and humility to kind-hearted people like you.
Our Humble Request
🙏 Please help us give Chirag a chance to live a healthier life
🙏 Every contribution—big or small—brings us closer to the goal
🙏 If you are unable to donate, please share Chirag’s story
Your support can help stop this disease from stealing our son’s future.
With gratitude and hope,
Sai Bhargavi & Family
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.
