Kaya Jana Humbert was our baby in bloom—a radiant, joyful little girl who brought beauty, strength, and purpose into the world from the very beginning. Her name means “restful place” and “God is gracious,” and she truly embodied both.
At just two weeks old, Kaya was diagnosed with Sphingosine Phosphate Lyase Insufficiency Syndrome (SPLIS)—a rare genetic condition so newly discovered that fewer than 50 cases had ever been reported worldwide. Despite having two healthy children and doing genetic testing in the past, no one ever told us we should consider testing again, as new conditions are discovered every year. We were blindsided.
Today, the number of known SPLIS diagnoses has nearly doubled to 96, and we know Kaya’s journey helped move that number forward—not just as a statistic, but as a spark for research, awareness, and connection.
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Kaya faced unimaginable challenges—kidney failure, daily dialysis, complex medication regimens—and yet she still gave us the gentlest smiles, soulful eyes, peaceful rest, and melodies that filled hospital rooms with hope. Her life was short, but her impact is immeasurable.
What many people don’t realize is that rare diseases primarily affect children, and too often go undiagnosed or misdiagnosed for years. This is why raising awareness about genetic health and testing matters. It’s not just about treatment—it’s about time. The earlier a condition is found, the sooner a family can make informed choices, access the right care, and advocate for their child.
This is where Kaya’s legacy takes root.
We created Kaya Girl Legacy to honor our daughter’s life by planting seeds of knowledge and empowerment in others. Our mission is to educate families on the importance of early and repeat genetic testing, especially as medical science continues to evolve. Kaya’s story reminds us that genetic conditions don’t wait for family history—they can happen to anyone.
Though our baby is no longer in our arms, she is now blooming in heaven, and her spirit continues to grow in every life she touches. Her story is a gift, and her legacy is one of grace, strength, advocacy, and love.
🧬 Why Genetic Testing Matters
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Children like Kaya show us how early knowledge can change lives. Help us share that message with more families.