My Story: Kaya’s Light and the Call to Awareness
By Yojana Rodriguez-Humbert, Founder of Kaya Girl Legacy, Inc.
When my daughter Kaya was born in December 2023, she looked perfect: rosy cheeks, bright eyes, and a peaceful spirit that instantly filled our home with joy. We had done everything “right.” My husband and I had both completed genetic testing years earlier, and no concerns were ever raised. But at just one month old, Kaya was diagnosed with Sphingosine Phosphate Lyase Insufficiency Syndrome (SPLIS), a condition so rare that only 46 cases were known worldwide at the time of her birth.
Her diagnosis changed everything. I found myself in a world of medical language I had never heard before: adrenal and thyroid insufficiency, kidney failure, compromised immune system, peritoneal dialysis, gene therapy, and a reality no parent ever imagines. SPLIS took us through 8 months of hospital stays, therapies, and prayers for a miracle. And while Kaya’s 14 months here with us was short, it was purposeful. She taught us how to fight with faith, how to hold on when the answers don’t come, and how to believe that healing can look differently than we expect.
After her passing, I knew her story couldn’t end there. I founded Kaya Girl Legacy, Inc. to make sure other families wouldn’t have to walk blindly into the unknown. Our mission is simple but deeply personal:
raise awareness about genetic health;
advocate for early testing; and
help families access the information and support that could change their futures.
Today, I share Kaya’s story because awareness matters. Every family deserves to know what’s possible, every child deserves a chance at care, and every diagnosis deserves compassion.
Kaya may have been one in a million, but, through her, we can help millions understand their genetics and raise their hope.
