Genetic conditions can sometimes be hidden, vague, or mimic more common illnesses. They don’t always show up at birth—and even families with healthy children can be impacted later in ways they never expected.

In our case, we had two healthy children. We had done genetic testing in the past and assumed we had covered our bases. No one told us that as science evolves, we should consider testing again—because new diseases are discovered all the time. When our daughter Kaya was diagnosed with a rare condition called Sphingosine Phosphate Lyase Insufficiency Syndrome (SPLIS), we learned just how quickly everything can change.

 

Genetic testing can:

• Help families understand the root cause of confusing or chronic symptoms

• Offer life-changing answers when time matters most

• Inform future family planning decisions

• Alert siblings, extended family, or future generations to important health risks

 

Genetic health isn’t just a one-time conversation—it’s a lifelong journey of staying informed and empowered.

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This isn’t just about one condition. It’s about the thousands of rare conditions that could impact any one of us.