Urgent: Help Layam Win His Fight Against SMA Type 2
Story
I’m the proud aunt of Layam, a brave little one in India facing a challenging medical journey. I’ve created this fundraiser on behalf of Layam’s loving parents and my cousin, Vivek Chandak and Radhika Chandak, to bring their urgent appeal to an international audience.
Layam’s story from his Parent’s words:
“Layam, a sweet and spirited 16-month-old boy who has been diagnosed with Spinal Muscular Atrophy (SMA) Type 2 — a rare, progressive disease that slowly robs children of their ability to move, eat, and eventually breathe.
Layam was born healthy and full of life. His smile lights up the room, and he has a spark that brings joy to everyone who meets him. But just a few months ago, our world turned upside down when we noticed he was missing key milestones—he wasn’t crawling or standing like other children his age. After countless tests and sleepless nights, we received the devastating diagnosis: SMA Type 2.
Without treatment, the condition worsens over time, leading to severe disability. But there is hope—Zolgensma, a revolutionary one-time therapy, can stop the progression of SMA and give Layam a real chance at life.
Here’s the urgent part: Zolgensma must be given before Layam turns 2 years old to be most effective—and he’s already 16 months. The therapy costs over 1 Million USD, and every day we wait, he loses this precious time. He are racing against the clock.
Every donation, no matter the size, will go directly towards Layam’s medical care, offering a lifeline to this precious child and their devoted family. Your support will help cover the cost of Zolgensma, giving Layam the best possible chance at recovery and a healthy future.”
Please consider donating and sharing Layam’s story with your friends, family, and networks. Together, we can ease the immense stress on Layam’s parents and give Layam the gift of hope and healing.
Thank you for your kindness and generosity.
Donate. Share. Support. For Layam.
To learn more about SMA and ZOLGENSMA follow the link here
FAQs
1. What is SMA and ZOLGENSMA?
SMA stands for Spinal Muscular Atrophy, a rare genetic disease that affects the motor neurons in the spinal cord, leading to weakness and wasting of muscles. Zolgensma is a gene therapy specifically designed to treat SMA in children under two years old by replacing the missing or faulty SMN1 gene with a working copy. More details can be found here:
https://www.zolgensma.com/how-zolgensma-works
2. How will the donations be used?
Every dollar contributed to this fundraiser will go directly toward Layam’s Zolgensma gene therapy treatment costs.
Funds will be transferred directly to the pharmaceutical company or their authorized subsidiary for the purchase of Zolgensma, as well as to the hospital for associated medical care.
3. Why are there 2 fundraisers for the same cause? We see 2 links on the internet.
They are running a single fundraiser across 2 different platforms – GoFundMe for international donors and Impact Guru for Indian donors. Total goal for the treatment remains 1.1M USD collectively across both platforms. These will be consolidated.
Impactguru link for Indian donors: https://www.impactguru.com/fundraiser/help-layam-chandak
Reference documents
#FightForLayam #SaveLayam #SMAAwareness #Zolgensma
Organizers :
Co-organized
Ankita Chandak and Rhythm Chandak are organizing this fundraiser.