Amassing over 50,000 views on YouTube, the short film “Fragile” was produced by Flow Like Water Films in association with Fragile X Society India. With a 30-minute run time and subtitles available in English and Hindi, the film delivers an impactful message about Fragile X Syndrome: it exists, there are people who live with it, and we need to understand it better.

Below is a conversation we had with Shalini Kedia, who founded India’s Fragile X Society and also serves as a FraXI Board Member. The film can be viewed free of charge on YouTube.

Shalini and her son Varun, who is India’s first person to be diagnosed with Fragile X Syndrome. Her journey, learning from and with Varun, inspired her to create the Fragile X Society of India, and eventually, the short film Fragile. 

Hello Shalini! It’s great to catch up with you. India has been a game-changer in FXS inclusivity in the past year, with Aamir Khan’s film シタレ・ザミーン・パー and now with Fragile. And what makes Fragilespecial is that you were involved in its making. How did the idea for Fragilebegin?

Fragile didn’t begin as a film—it began as a need. Twenty-seven years ago, when my son Varun was diagnosed, there was no awareness, no guidance, and no roadmap for families like mine. I had to build everything from scratch. Over the years, through the Fragile X Society of India, I’ve met hundreds of families walking that same uncertain path. And one thing became very clear—awareness was still not reaching people in a way that truly connects. The idea to turn this into a film actually came from Rajniesh Duggall. He deeply believed that this story needed to be told through cinema, and I truly owe it to him for taking that first step. Along with Anand Pachigar and their production house Flow Like Water Films, they brought this vision to life in a way that was both sensitive and powerful. For me,Fragile became a bridge—between years of lived experience and a format that could reach hearts at scale. I always say this—Fragile may be rooted in my journey, but it became a film because Rajniesh believed in it enough to take it forward.

How did your experience as Varun’s mum and founder of the Fragile X Society of India shape the film?

Every frame of Fragile is rooted in lived experience. As a mother, I’ve gone through the confusion, the missed signs, and the long journey to diagnosis. As the founder of the Fragile X Society of India, I’ve seen this same story unfold across countless families. That’s what shaped the emotional truth of the film. But what made this collaboration special was how open Rajniesh Duggall and Anand Pachigar were to understanding these nuances. Through Flow Like Water Films, they ensured that the storytelling stayed authentic, respectful, and deeply human. We were very intentional about everything—the silences, the small moments, the emotional undercurrents—because that’s what families truly relate to.

How was the Fragile X community involved in the film?

The community is at the heart of Fragile. From the very beginning, this film was never meant to be made about families—it was made with them. Many of the emotional moments are inspired by real experiences shared by parents over the years. Families supported the film by sharing their stories,encouraging us, and standing behind the purpose. This film belongs to the community as much as it does to us.

What change do you hope the film will bring?

If Fragile can do one thing, I hope it helps families ask the right questions earlier. Fragile X syndrome is the most common single gene cause of autism, and yet it is still often overlooked or misdiagnosed. An accurate diagnosis opens the door to genetic counseling and helps families make informed decisions about the future. Beyond that, I hope the film shifts perspective—children don’t fail, systems do.

Before the end credits of the film, we see a few stories of remarkable individuals living with FXS. Were there any stories that didn’t make it into the film but impacted you?

There are so many stories that stay with me. I’ve met families where multiple children across

generations are affected simply because there was no awareness or access to genetic counseling at the right time. But I’ve also seen incredible resilience—parents turning their journeys into advocacy, individuals with Fragile X bringing joy and warmth into the world. These stories are the reason the film exists.

Do you have any plans to organise a screening for the community? 

Absolutely. That is something very close to my heart. We are exploring ways to create community screenings across different cities—spaces where families can watch Fragile, connect, and access guidance and support. Because awareness should lead to connection, understanding, and action.