Today we’d like to introduce you to Yojana Rodriguez Humbert Kaya Humbert.
Hi Yojana Rodriguez Humbert, please kick things off for us with an introduction to yourself and your story.
I’ve always believed that purpose is often born from the places that hurt the most. For more than a decade, I worked in higher education, helping students find their footing in a new country. My days were filled with guiding others toward their dreams, never imagining that my greatest lesson in purpose would come from my own child.
In December 2023, my daughter Kaya was born. A few weeks later, we learned she had an ultra-rare genetic condition called SPLIS, fewer than 100 known cases worldwide. That moment changed everything. What followed were months of hospital stays, faith-filled prayers, and a determination to understand what no parent should ever have to face.
After Kaya passed, I found myself at a crossroads: stay silent in grief, or let her story bloom into something that could help others. That’s how Kaya Girl Legacy, Inc. was born, a nonprofit dedicated to raising awareness about genetic health and the importance of early testing. It’s become my way of turning pain into purpose, faith into action, and my daughter’s life into a lasting legacy.
Every time I speak about Kaya, I’m reminded that God never wastes pain, He reshapes it into purpose. And that’s what keeps me moving forward.
We all face challenges, but looking back would you describe it as a relatively smooth road?
The road has been anything but smooth. Losing a child is the kind of pain that rearranges everything you thought you knew about life, love, and faith. When Kaya was diagnosed, there was no roadmap, no community, no clear answers, just endless nights searching for hope in medical journals and prayer.
Starting Kaya Girl Legacy meant learning how to turn grief into movement. I had to figure out how to build a nonprofit while balancing motherhood, work, and still making space for me to able to grieve. There are moments when I question if I am strong enough to keep going, but every time, I remembered why I started.
The hardest part wasn’t just losing Kaya; it was deciding to live differently because of her. There’s still heartbreak in every conversation I have about her condition, but there’s also light. Kaya taught me that strength doesn’t always look loud, sometimes it’s quiet, steady, and fueled by faith.
Every step since has been guided by that truth. What began as a personal loss has grown into a mission of awareness, advocacy, and hope, one that reminds families they’re not alone, and that beauty can still bloom from the hardest places.
Thanks for sharing that. So, maybe next you can tell us a bit more about your work?
My work through Kaya Girl Legacy, Inc. was born from love, loss, and a deep belief that knowledge can change lives.
After my daughter Kaya was diagnosed with SPLIS, an ultra-rare genetic condition, I realized how little awareness existed around genetic health and early testing. I created Kaya Girl Legacy to change that.
The foundation’s mission is to empower families with knowledge about their genetic health, advocate for early and accessible testing, and support those affected by rare diseases. We focus on education, awareness, and community, helping people understand that genetics isn’t just science, it’s part of our family story.
What sets Kaya Girl Legacy apart is its heart. We speak from lived experience, not statistics. Every conversation, post, and partnership carries the spirit of a my Kaya girl who continues to bloom through purpose.
Kaya Girl Legacy reminds people that even from unimaginable pain, beauty and impact can grow. Our work is a message of hope, that through awareness, compassion, and faith, we can rewrite what’s possible for future generations.
Are there any books, apps, podcasts or blogs that help you do your best?
I’m a firm believer that what we pour into our minds shapes how we show up in the world. My go-to source of strength has always been the Bible, especially the Psalms ( I read this daily with Kaya in her final days on earth) and the Book of Isaiah. They remind me that peace and purpose can coexist, even in pain.
For encouragement and growth, I love the “Grief Healing for Moms” podcast by Fabiana Batista, it’s raw, faith-filled, and helps me find comfort in community.
And when I just need to slow down, I genuinely enjoy listening to a good audiobook, usually a cozy kitchen mystery of some sort. It gives my brain permission to rest from the constant “go-go-go” parts of life.
I also rely on the YouVersion Bible App for my daily devotionals and my notes app to keep all my worlds, mom, professional, and non-profit founder, in one place. Each of these tools keeps me grounded and balanced, reminding me that growth, rest, and purpose can all coexist.
Contact Info:
- Website: https://www.kayagirllegacy.com
- Instagram: KayaGirlLegacy
Image Credits
Yojana Rodriguez-Humbert
