SMAshing Limits: How Siara Is Redefining Disability Through Film

Credit: Adobe Stock/Halfpoint

At just 18 years old, Siara is already using her voice — and her camera — to change the way we see disability on screen. An award-winning filmmaker, she’s telling authentic, powerful stories that highlight both the challenges and the triumphs of living with spinal muscular atrophy (SMA).

Beyond filmmaking, Siara shares her life openly, including her interabled relationship, to remind people that love, joy and connection can look different for everyone — and that’s something worth celebrating.

Now, she’s partnering with Novartis on SMAshing My Limits, a new campaign created with teens and young adults in mind. The initiative celebrates accomplishments big and small, while providing tools and resources to help people with SMA build independence, pursue passions and feel supported.

Can you share a little bit about your journey into filmmaking and how storytelling has become such an important outlet for you?

Siara: Honestly, filmmaking was always something I loved, whether it was making videos with friends, writing little scripts or even editing gaming videos when I was younger. As I got older and actually learned about film, I realized this was what I wanted to do. Making my first film gave me a way to express myself in ways I never could just by talking. I think that’s what makes film so powerful for me and for others — it lets you put emotions on screen that you might not be able to say out loud.

What inspired you to speak openly about your interabled relationship, and why do you think it’s important for others to hear these kinds of stories?

Siara: I’m open about my relationship because I want people to see our happiness for what it is, and also to show that it’s possible. Love looks different for everyone, and I think sharing our story helps normalize interabled relationships while reminding people that connection is what really matters.

Tell us about the SMAshing My Limits campaign — what does it mean to you, and what do you hope other young people with SMA will take away from it?

Siara: SMAshing My Limits means a lot because it shows that we’re more than just our diagnosis. For me personally, it’s also about showing that people with disabilities or who use wheelchairs can have a place in film. I’ll be honest, I was nervous at first because film is often described as such a physically demanding space. But there are so many roles and ways to take part, and I want others to know they can belong here too.

What advice would you give to other teens and young adults with SMA who want to build independence and pursue their passions?

Siara: Start with small steps, and don’t be afraid to ask for help; it doesn’t take away from your independence. Find what excites you, and let yourself dive into it, even if it looks different from how someone else might do it. Surround yourself with people who believe in your vision and who support you, but also trust your own voice. Your passion is valid, and your perspective is powerful.

Looking ahead, what are your hopes — both personally and for the SMA community?

Siara: Personally, I hope to continue building my career in filmmaking and bring stories to life that both entertain and inspire. For the SMA community, I hope there’s more visibility, more opportunities and more access — not just in health care, but in everyday life and in creative industries. I want to see more of us telling our own stories on screen, because the world needs to hear them.