Empowering Genetic Health &
Rare Disease Awareness
Welcome to Kaya Girl Legacy, Inc.
Empowering Genetic Health & Rare Disease Awareness
Kaya Girl Legacy is dedicated to advocating for universal access to genetic screening, supporting families affected by rare diseases like SPLIS, and pushing for policy changes that ensure proactive healthcare. Inspired by the life and strength of Kaya, we are committed to ensuring that every person has the opportunity to understand their genetic health and make informed decisions.💛
Kaya was a beautiful and strong baby girl who battled Sphingosine Phosphate Lyase Insufficiency Syndrome (SPLIS), a rare genetic disorder.
Despite the challenges, she inspired those around her with her resilience and love. Her legacy lives on through this foundation, ensuring that other families have access to the knowledge and resources they need to make informed healthcare choices.
Kaya’s Story
Our Mission & Advocacy
Advocating for Free Genetic Testing
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Just as newborns receive genetic screening at birth, we believe that adults should have the opportunity for routine genetic testing. This knowledge can help individuals:
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Understand their genetic risks.
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Make informed choices about family planning & healthcare.
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Access early interventions for conditions that may develop later in life.
