Alyssa’s Life Was Interrupted by PCDH19 Epilepsy, Forcing a Child to Endure Seizures, Fear, and Uncertainty Before She Ever Knew What Stability Felt Like.

Ten Years Ago, HE COULDN’T EAT, COULDN’T BREATHE, AND NO ONE KNEW WHY
Parker was just months old when doctors said what no parent ever wants to hear: failure to thrive. Born prematurely, time didn’t improve his condition. He struggled to finish bottles, his weight remained stagnant, and every ounce felt like a battle he kept losing.

Then came a string of diagnoses. Swallowing became dangerous, and oxygen was no longer optional. Feeding tubes replaced feeding time, and his parents learned how to attach them to his face, constantly listening for the beeping alarms in the quiet of the night.
Finally, a diagnosis arrived — a rare condition that affected his face, airway, and growth. His ability to breathe, eat, and sleep was deeply compromised.

Surgery was the only hope.
Though it didn’t solve everything, it opened his airway and, for the first time, Parker could breathe freely.
For the first time, he could begin to thrive.
