Kristen DeAndrade is championing inclusion

Kristen DeAndrade is sitting outdoors on a rustic wooden bench, smiling warmly as she holds her book, Little Legs, Big Heart. She is wearing a black sleeveless top paired with a soft pink tulle skirt. The book cover is visible, featuring the title and a photo of Kristen as a child. The background shows greenery and a peaceful setting, reflecting a calm and inspiring moment as she enjoys sharing her story. Kristen's approachable demeanor and the vibrant setting emphasize her message of empowerment and self-acceptance. (Photo credit: Monica Lokitus)
Kristen DeAndrade | Photo Credit: Monica Lokitus

Kristen DeAndrade is the walking and dancing proof that perseverance can break barriers and rewrite stories, especially when it comes to dwarfism and disability. Born with achondroplasia, the most common form of dwarfism, Kristen’s life is her canvas, and she’s painting a whole new picture of what it means to live with differences.

As the author of Little Legs, Big Heart: One Girl’s Journey of Acceptance, Perseverance, and Growth, she invites readers on a heartfelt adventure through the universal battles we all face—fear, insecurity, and embracing the parts of ourselves we usually hide.
Then, in 2024, Kristen did some-thing huge. She founded The Little Legs Big Heart Foundation, a nonprofit that’s all about creating a space of inclusion, community, and support for those with skeletal dysplasia. Through efforts like the Little Legs Lifeline Fund—offering financial aid for medical treatments—she’s crafting real solutions for those navigating life with skeletal dysplasia, all while spreading love and light.

Now calling West Palm Beach, FL, home, Kristen thrives on creativity—whether she’s twirling on the dance floor, whipping up magic in the kitchen, or basking by the sea. She’s also deeply involved in her local community, working closely with The Paley Orthopedic & Spine Institute and The Quantum House, where she’s a pillar of support for families facing medical challenges. Kristen’s inspiring presence has also graced the TEDx stage and appeared in a kaleidoscope of media outlets like The Learning Channel, NY Post, Refinery29, Women’s Health, The Female Lead and more. Kristen’s mission is simple but powerful: to shine a light on adversity, celebrate the power of connection, and inspire others to embrace their scars as stories worth sharing.

Kristen DeAndrade is standing in front of large, red TEDx letters on a stage. She is smiling confidently and holding a crutch, dressed in a black sleeveless dress with sandals. The lighting is warm, with purple tones illuminating the background, and Kristen appears ready to deliver a talk or presentation. This image captures her poised and inspiring presence at a TEDx event, highlighting her advocacy and storytelling.
Graphic featuring a Q&A section with Kristen DeAndrade. The design includes a pink and blue speech bubble icon with the letters 'Q&A.' To the right, a quote reads: 'It’s not about pleasing others or fitting into a mold society expects from you. It’s about embracing who you are, flaws and all, and living authentically.' ~ Kristen DeAndrade.

Can you share a pivotal moment that shaped your journey as an advocate for people with dwarfism?

A pivotal moment in my journey as an advocate came in third grade, when our class read Thinking Big, a story about a little girl named Jamie who also had achondroplasia. My teachers saw this as an opportunity to empower me, encouraging me to share my own experiences with the class. I compared my life with Jamie’s, highlighting both the similarities and differences between us. That was the first time I realized the impact of using my voice to educate others, and it sparked my passion for advocacy and breaking down barriers, set by society, for people with dwarfism, disabilities and differences.

What challenges have you faced in raising awareness about dwarfism especially as limb-lengthening procedures are frowned upon in the dwarfism community. What keeps you motivated to continue the fight?

Advocacy is definitely not without its challenges, especially within the dwarfism community, where procedures like limb-lengthening are often frowned upon. I learned early on that I wasn’t going to be everyone’s cup of tea. But as the saying goes, if everyone agrees with you, you’re probably not pushing the right buttons. Since day one, I’ve been going against the grain, and people always have something to say. I still remember being told at 12 years old, “Shame on you for trying to undo diversity.” It was shocking then, and it’s still happening now.

With the recent FDA approval of VOXZOGO and ongoing drug trials for achondroplasia, I realized how many people are still receiving inaccurate information. I couldn’t sit back knowing that someone like me, or new parents, were being shut down when asking questions about medical options that could improve quality of life. That just isn’t right. Life with dwarfism is hard enough—we’re constantly navigating a world that wasn’t built for us, and dealing with media-driven ignorance. The last place we should feel excluded from is our own community.

For me, this fight isn’t personal anymore. I’ve already made my choices, I stand by them and I have won. It’s about the future generations, and those in the community who feel like they don’t have a voice; kids, adults, parents and caretakers all wanting to know how to achieve the best quality of life possible when living with dwarfism. Me being loud and relentless, its for them. They keep me motivated. Because there is no “right” way to live – it looks different for everyone. And, everyone has a right to accurate information, community, etc.

You’ve empowered many people to embrace their differences. What advice would you give to someone who is struggling to accept or love themselves?

 The biggest piece of advice I can offer is to remember that, at the end of the day, you are your own biggest motivator and confidant. When I finally stopped caring about everyone else’s opinions and chose to live my life according to my plan, that’s when true empowerment found me. It’s not about pleasing others or fitting into a mold society expects from you. It’s about embracing who you are, flaws and all, and living authentically. You have the power to define your own worth—no one else can do that for you.

Living with achondroplasia presents unique challenges. How has this influenced your approach to every-day life, travel, and relationships?

Living with achondroplasia has definitely shaped my approach to life, travel, and relationships in ways I never anticipated. Honestly, I wouldn’t be where I am today if I hadn’t faced adversity head-on, seeing the world through a lens that only 1 in 40,000 people truly know. Pain has always been my greatest teacher, and it’s taught me that while we have control over a lot of things, there’s also so much we don’t control.

Over the past eight years, I’ve undergone 19 surgeries (soon to be 20!) because of the mistreatment and misdiagnosis of spinal stenosis, which is the leading cause of disability for those living with achondroplasia. That experience has made me really intentional about controlling what little I can—my attitude, the opportunities I go after, the relationships I nurture. I always say, “If not now, then when?” None of us know what tomorrow will bring, so I make the most of today, in every way possible. When presented with an opportunity to travel, meet new people and make connections – it is incredibly rare that my answer is “no.” Those closest to me will tell you, I do not stop. Ever.

You’ve been a role model for so many. Can you share a story where your work or words made a significant impact on someone else’s life?

Yesterday we had a 9 year old patient come into our clinic for a followup appointment after she had corrective surgery on both of her legs to get her out of pain. Even though she lives with a completely different form of skeletal dysplasia than me, I have been able to relate to her, her struggles and her triumphs on a level that most people cannot. After her appointment she gave me a card with a note that read, “We love you so, so, so much. You have done so much for me and I know how thankful I am and I know how much other people you have done things for are thankful for you too.”

 

It’s those little moments that really make me pause and reflect on how much more confident and less anxious little Kristen might have been when facing tough situations if she had the same sense of community I have now. Community is everything, and while I may have an impact on other people’s lives, the truth is, the way they’ve touched my heart and shaped my life is just as profound. That’s something I’m truly grateful for.

The image shows Kristen DeAndrade standing next to a hospital bed, smiling and flashing a peace sign with her fingers. Beside her in the bed is a young child, also smiling and giving a peace sign, while wearing a hospital gown and connected to medical equipment. The setting appears to be a hospital room, with various medical devices visible in the background. The moment captured radiates warmth and positivity, emphasizing Kristen’s supportive presence and her connection with the child.