Primary Goals

The primary goal of this project is to save the life of Dhrishiv Soni, a 7-month-old infant born on August 5, 2025, who is battling a rare and aggressive genetic disorder called Spinal Muscular Atrophy (SMA) Type 1. SMA Type 1 leads to progressive muscle wasting, respiratory failure, and the loss of basic motor functions. Our mission is to raise approximately Rs.9 to Rs. 9.5 Crores to procure Zolgensma (Onasemnogene Abeparvovec), a one-time gene therapy that offers the only hope for a healthy life.

Key Activities

The Panpalia Foundation is spearheading this drive via truCSR.in to bridge the massive financial gap for Dhrishiv's middle-class family. Every rupee raised will be utilized for:

• Procurement of Zolgensma: Facilitating the direct payment to the pharmaceutical provider for this life-saving gene therapy.
• Import Duties & Logistics: Managing the specialized transport and customs requirements necessary to bring the medicine to India.
• Clinical Administration: Covering the costs of hospitalization and the specialized infusion process at the Royal Institute of Child Neurosciences (RICN) in Ahmedabad, under the supervision of Dr. Siddharth Shah.

Intended Impact

Dhrishiv's condition was confirmed via genetic testing on January 19, 2026, and he is currently experiencing a regression in developmental milestones, including a loss of neck control and respiratory vulnerability. Without this gene therapy, his muscles for sitting, swallowing, and breathing will continue to waste away.

The intended impact of this project is to stop the progression of this fatal disease and give Dhrishiv a lifetime of milestones—from sitting up to taking his first steps. As his father, Darshan Soni, states, "I am not asking for wealth; I am asking for my son's future". Through the transparency of the truCSR portal, all medical reports and RICN estimates are available for audit to ensure every contribution directly supports Dhrishiv's survival.

Dhrishiv Soni, an 8-month-old infant (DOB: 05/08/2025), is battling Spinal Muscular Atrophy (SMA) Type 1, a rare and aggressive genetic disorder. This condition leads to progressive muscle wasting, respiratory failure, and the loss of essential motor functions. Dhrishiv is already experiencing developmental regression, including loss of neck control, hypotonia (floppiness), and respiratory vulnerability. Without the one-time gene therapy, Zolgensma, his muscles for sitting, swallowing, and breathing will continue to deteriorate, and he faces a significantly shortened lifespan. The treatment costs between Rs. 9 and Rs. 9.5 Crores, a sum that is insurmountable for his middle-class family. Despite exhausting all personal savings, the family remains short of the funds required to import and administer the drug before the window for effective intervention closes.