My name is Parth Soni, and Dhrishiv is my nephew (Age: 7 months old)

He is the first baby in our family’s next generation — the little boy who brought indescribable joy into all our lives. The day he was born, our home was filled with celebration, laughter, and so much hope for the future.

None of us imagined that just six months later, we 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. This happens due to a missing or faulty SMN1 gene, which means his tiny body cannot produce enough SMN protein — a protein essential for muscle strength and survival.

Without this protein:

• Muscles gradually become weak and 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.

BUT THERE IS HOPE !

There is a revolutionary one-time gene therapy called Zolgensma (Onasemnogene abeparvovec) 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 real chance at life.

However, the cost of this one time life-saving treatment is USD 2 Million.

This is a one-time treatment cost — an amount that is far beyond what a middle-class family like ours can afford. We never imagined we would be in a position where we would have to raise funds just to give our child a chance to live.

**This treatment has to be provided within the age of 12 months.**

As parents, my brother and sister-in-law are living a nightmare no parent should ever face. And as his uncle, it breaks my heart to see Dhrishiv try to move his tiny arms, only to get tired within seconds. There is a silent fight in his eyes — a fight he shouldn’t have to fight at this age.

We dream of seeing Dhrishiv sit on his own.

We dream of watching him take his first steps.

We dream of hearing him call out to his parents.

Today, I fold my hands and humbly request your support. Every single contribution — no matter how small — brings us closer to saving Dhrishiv’s life. An uncle’s love stands strong beside a father’s fight, and we are doing everything in our power to give him the chance he deserves.

All funds raised through this campaign will be transferred to NOVARTIS for Zolgensma treatment. The amount will be used solely for his medical treatment and related expenses, including post-hospitalization care, rehabilitation therapies, diagnostics, medications, and follow-up consultations.