Yojana Rodriguez Humbert has taken her push for wider access to genetic testing and counseling to Capitol Hill after her daughter Kaya died following a diagnosis of the rare condition SPLIS.
Kaya was born in 2023 and appeared healthy, but newborn screening raised concerns. By six months old, she had developed end-stage kidney disease and needed dialysis. Rodriguez Humbert said Kaya was the 43rd known case of SPLIS worldwide. Kaya died in 2025 at 14 months old.
Rodriguez Humbert said she underwent carrier screening in 2014, three years before the gene associated with Kaya’s condition was identified. She said no one had advised her to revisit her results.
She has since founded Kaya Legacy and wants more families to have access to genetic counselors who can help them understand risks and interpret test results.
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