Our world changed in one moment.
That was the day doctors told us our 8-year-old son, Little Vivaan, has Duchenne Muscular Dystrophy (DMD) — a rare genetic disorder that slowly takes away a child’s ability to walk, run, and even breathe.
Vivaan is being treated at Narayana Health SRCC Children’s Hospital and Saifee Hospital in Mumbai.
Every day since his diagnosis has felt like a race against time.
What’s Happening to Vivaan
DMD is caused by a missing piece in the DMD gene.
In Vivaan’s case, Exon 50 is deleted, so his body can’t make dystrophin — the protein that protects muscles. Without it, his muscles weaken bit by bit. Doctors confirmed it’s an out-of-frame deletion, the severe Duchenne type that mostly affects young boys.
The One Hope — Exon-Skipping Therapy
There is a targeted treatment called Eteplirsen (Exondys 51).
It “skips” Exon 51, allowing the body to produce some dystrophin again. It’s not a cure, but it slows the disease — buying precious time, strength, and hope.
This therapy is available only in the US, and can be accessed in India through special import programs — costing over ₹15 crores for long-term treatment. Each monthly injection is around ₹1 lakh.
For a family earning ₹50-60 thousand a month, this is beyond reach.
Why Time Matters
Vivaan is still young enough for the therapy to work best.
Every month we wait, his muscles lose strength that can never come back. Early treatment means the chance to walk, to run, to live like any other child.
Our Struggle
We’ve spent everything — savings, loans, and borrowed help — on tests, physiotherapy, and hospital visits. But we cannot do this alone.
We’re turning to you — to everyone who believes that one child’s future is worth saving.
🙏 How You Can Help
1. Donate whatever you can to support Vivaan’s treatment.
2. Share this story widely — every post, every forward matters.
3. Tag friends, groups, or organizations who might help.
Our Dream
We dream of the day Vivaan runs to school on his own feet, falls on the grass, gets up laughing — just a little boy being a boy.
No wheelchairs. No hospital beds. Just freedom.
That dream keeps us alive.
Please help us make it real.
With hope,
Sagar Wavhal (Vivaan’s Dad)
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.
