A Desperate Father’s Appeal to Save His Son’s Life
My name is Darshan Soni, and Dhrishiv is my first child.
The day he was born was the happiest day of my life. I held him in my arms and silently promised that I would protect him from everything. I never imagined that just six months later, I would be fighting to save his life.
Dhrishiv has been diagnosed with Spinal Muscular Atrophy (SMA) Type 1 — the most severe form of this rare genetic condition. SMA Type 1 occurs due to a missing or faulty SMN1 gene. Because of this, his body cannot produce enough SMN protein — a protein essential for muscle strength and survival.
Without this protein:
- Muscles become weak and gradually waste away
- Babies struggle to hold their heads up
- Swallowing and breathing become difficult
Without treatment, many children with SMA Type 1 do not survive beyond early childhood
As a father, there is nothing more painful than watching your child struggle with something as basic as movement.
Every day, I see my son trying to move his tiny arms. I see him getting tired so quickly. I see a silent battle in his eyes. And I feel helpless.
But there is hope.
There is a revolutionary gene therapy called Zolgensma (Onasemnogene abeparvovec). It is a one-time treatment that works by replacing the faulty gene with a healthy copy, allowing the body to produce the missing SMN protein. This treatment can stop the progression of the disease and give children like Dhrishiv a chance at a healthier, longer life.
However, the cost of this life-saving treatment is ₹9 crore.
Although it is available under an installment plan, the amount is still overwhelming for a middle-class family like ours. I never imagined I would have to put a price on my child’s life.
I am not asking for wealth.
I am not asking for comfort.
I am asking for my son’s future.
I dream of seeing Dhrishiv sit on his own.
I dream of seeing him take his first steps.
I dream of hearing him call me “Papa.”
Today, I humbly reach out to everyone reading this. Please help me save my son. Every contribution — big or small — brings us one step closer to giving Dhrishiv a new life.
A father’s greatest responsibility is to protect his child.
Please help me fulfill that responsibility.
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.
