We’re excited to introduce you to the always interesting and insightful Kristen Deandrade. We hope you’ll enjoy our conversation with Kristen below.

Hi Kristen, thanks for joining us today. We’d love to hear the backstory behind a risk you’ve taken – whether big or small, walk us through what it was like and how it ultimately turned out.

One of the biggest risks I’ve taken was creating the Little Legs Big Heart Foundation. Growing up, I wasn’t part of the Little People of America (LPA) or any community centered around skeletal dysplasia. The reason was painfully clear: LPA frowned upon limb lengthening, an option my parents made available to me when I was young. When I ultimately chose to undergo the procedures, I faced chastisement from adult members of the dwarfism community, who told me, “Shame on you for trying to undo diversity.”

That experience left a mark. It kept me away from LPA for years and left me feeling like I didn’t belong in the very community I was born into. Only recently did I realize how much of a void that created in my childhood—a lack of shared connection, support, and understanding.

At the urging of a friend, I decided to give LPA a chance as an adult. My friend recognized the value I could bring to the community, especially around topics like limb lengthening, drug therapies, spinal stenosis, and mental health. I also joined with the hope that after all these years, the organization would be more accepting of me and the choices I made at 12 years old.

Unfortunately, I quickly realized that while I could help individuals, the organization as a whole was no longer inclusive or fully supportive of everyone in the skeletal dysplasia community. I hoped for change from within, but it became evident that it wasn’t going to happen.

That’s when I decided to take the risk and create the Little Legs Big Heart Foundation. I wanted to build something new—a foundation that prioritized connection, education, and advocacy for everyone, regardless of their medical decisions or personal experiences.

Starting from scratch wasn’t easy, but the response has been nothing short of incredible. I officially launched the foundation in May, and by November, 188 people had registered for our inaugural Skeletal Dysplasia Conference. That moment of validation confirmed what I had long suspected: there are real, unmet needs in this community.

This experience taught me that sometimes you have to create the spaces you wish existed—not just for yourself, but for everyone who has been waiting for a community that truly sees and supports them.

Awesome – so before we get into the rest of our questions, can you briefly introduce yourself to our readers.

For those meeting me for the first time, “Hello!” I’m the founder of the Little Legs Big Heart Foundation, a nonprofit dedicated to empowering the skeletal dysplasia community through advocacy, education, and connection. I’m a self-published memoir author, international motivational speaker, and advocate. But at my core, I’m a creative spirit who finds joy in kitchen experiments, the ocean, anything glittery, and most of all, being auntie kk—a title that holds a special place in my heart.

My journey into this work is deeply personal. I grew up feeling isolated, as I wasn’t part of any formal community for individuals with dwarfism. My parents made the groundbreaking decision to offer me the choice to undergo limb lengthening surgery, which I began at the age of 12. That choice, though life-changing for my health and functionality, led to criticism from members of the dwarfism community. Being told, “Shame on you for trying to undo diversity,” as a child left a lasting impact. It taught me the power of making decisions that align with your values, even when others don’t agree.

For years, I stayed outside of organized communities like Little People of America. But as I grew older, I realized there were gaps that needed to be addressed, especially around critical issues like limb lengthening, drug therapies, spinal stenosis, and mental health. When I eventually joined LPA, it became clear that the organization wasn’t fully inclusive or meeting the needs of everyone in the community. That realization is what propelled me to create the Little Legs Big Heart Foundation—a space where every voice is heard and valued, regardless of personal or medical choices.

Our foundation offers a wide range of resources and services. We host educational events like the Skeletal Dysplasia Conference, create awareness campaigns for Dwarfism Awareness Month, and provide a platform for sharing stories and building community. We’re also focused on advocating for better healthcare education so that primary care physicians and specialists can provide informed, compassionate care for individuals with skeletal dysplasia.

What sets us apart is our inclusivity and authenticity. I’ve lived the experiences that many in this community face—surgeries, stigmas, and the constant balancing act of advocating for yourself in a world that often doesn’t accommodate differences. I’m not just working for this community; I’m working with it, as someone who understands the struggles firsthand.

I’m most proud of the incredible response we’ve received since launching the foundation. Seeing 188 people register for our inaugural conference in just a few months shows how hungry the community is for connection, support, and resources.

What I want everyone to know about Little Legs Big Heart is that it’s not just a foundation; it’s a movement. It’s about standing tall (no matter how tall you are) and making a difference for ourselves, our families, and future generations. Whether you’re here to learn, connect, or advocate, we welcome you with open arms and a big heart.

Let’s talk about resilience next – do you have a story you can share with us?

In 2015, my life changed dramatically. I was on the verge of paralysis, and it felt like everything was crumbling around me. The journey back from that point has been nothing short of a battle. Over the past eight years, I’ve undergone 20 surgeries—each one a grueling but necessary step to keep me on my feet, both literally and figuratively.

At my lowest point, I found myself on disability and food stamps, trying to piece my life back together. It was humbling and heartbreaking, but it also sparked something within me—a determination to turn rock bottom into a foundation for a comeback.

That resilience is what drives me today. Every challenge I’ve faced has reinforced my belief that no matter how tough life gets, we can rise, rebuild, and thrive. This isn’t just my story—it’s a testament to the power of perseverance, and I hope it inspires others to keep fighting, no matter how steep the climb.

Training and knowledge matter of course, but beyond that what do you think matters most in terms of succeeding in your field?

In my field, what has truly helped me succeed isn’t just training or knowledge—it’s the personal experiences that shaped me and deeply affected how I viewed myself and the world around me.

Life has taught me many lessons—through years of surgeries, the stigma I faced, and the isolation I felt. These experiences showed me the value of empathy. I realized that if I wanted to make a real difference, I couldn’t just speak for others—I had to walk in their shoes. That’s the driving force behind the Little Legs Big Heart Foundation: creating a space where people with similar challenges can connect and know they’re not alone.

Trust also grew from my own journey. When I started Little Legs Big Heart, I knew many in the community had been let down by organizations that didn’t understand their needs. I had been there myself. I had to build trust, not through lofty words, but by sharing my own story—about the struggles I had faced and the lessons I had learned. People began to see that I wasn’t just advocating for them; I was one of them. That shared experience is what has allowed trust to flourish.

And when it comes to resilience, I know it firsthand. I hit rock bottom at one point, but it was from that place that I learned how to rise again. Every surgery, every setback has only made me more determined. Success isn’t defined by the absence of hardship—it’s about having the courage to keep going, no matter how many times you fall.

Personal experience has given me the empathy to understand others, the trust to build meaningful relationships, and the resilience to keep fighting for the change we need. That’s what makes me, and the Little Legs Big Heart Foundation, different—it’s not just about advocating from the outside; it’s about doing it from the inside, with the weight of lived experience backing every word.

Contact Info:

• Website: https://www.littlelegsbigheartfoundation.org
• Instagram: @littlelegsbigheart @littlelegs.bigheart.foundation
• Facebook: @littlelegsbigheart @littlelegs.bigheart.foundation
• Linkedin: https://www.linkedin.com/company/the-little-legs-big-heart-foundation — https://www.linkedin.com/in/kristen-deandrade-674a51141/

Image Credits

@joeymacphoto