Organization Spotlight: Kaya Girl Legacy, Inc.

Nov 10

About Kaya Girl Legacy

Kaya Girl Legacy, Inc. is a Florida-based nonprofit founded in memory of Kaya Humbert, a beautiful baby girl born with Sphingosine Phosphate Lyase Insufficiency Syndrome (SPLIS), one of 46 known cases worldwide. Her life inspired her mother, Yojana Rodriguez-Humbert, to create a foundation dedicated to empowering families with knowledge about their genetic health and advocating for early access to genetic testing and rare disease awareness.

The Origin Story

Before Kaya’s diagnosis, Yojana and her husband had completed genetic testing that showed no concerns in 2014 — Kaya’s diagnosis in 2023 is a reflection of how medical science is constantly evolving. When Kaya was diagnosed with SPLIS at 5 weeks old, it became clear how many families could unknowingly carry or encounter rare genetic conditions. SPLIS was only discovered in 2017, and no one in the Humberts’ years of family planning shared that they should reconsider genetic testing. However, Kaya’s journey, though brief, revealed a powerful truth: early awareness saves lives.

Kaya Girl Legacy was created to transform that pain into purpose, spreading education, support, and advocacy so that other parents can access resources, genetic counseling, and hope much earlier in their journeys.

Why It Matters

Empowering Families: Promotes proactive genetic health education for individuals and families before, during, and after pregnancy.
Bridging Science and Faith: Inspires families to hold onto hope while navigating the realities of rare disease diagnoses.
Advocating for Access: Works to remove barriers to genetic testing and counseling, especially for families who face financial or informational gaps.
Honoring Kaya’s Light: Every initiative, partnership, and story shared continues Kaya’s legacy, one that reminds us that awareness can change generations, building a legacy far beyond our own lives.