Open a parent’s phone during the diagnostic odyssey and you won’t find a neat and tidy to-do list. You’ll find scribbled half-thoughts and spur of the moment reminders like: “Call Dr. Kim. Still no answers.” “Ask FB group about EDS.” “Google genetic testing—GeneDx?” “Another maybe. Another no.” “Don’t give up.” “Hope.” It’s not organized. It’s not linear. It’s just...everything. Questions, symptoms, follow-ups, and fears typed out as they come. Because when you’re trying to figure out what’s going on with your child, EVERYTHING matters. And then one day, finally: a diagnosis. It doesn’t solve everything, but it gives you language. A plan. A place to start.
#endtheodyssey
Clinical Affairs Leader | I help mission-driven diagnostics and precision medicine companies accelerate evidence generation, build high-trust teams and sustainable systems that move innovation forward.
3dThanks for sharing, GeneDx. So powerful! Behind every diagnosis is a story like this, full of resilience, love, and the determination to keep going.