Kaia was diagnosed with Gould Syndrome (COL4A1) in March of 2022 after experiencing her first seizure. Although we learned later about the genetic cause, Kaia’s journey began long before that. During my pregnancy, she suffered a brain bleed in utero. At the time, I didn’t understand how severe it was or what her future would look like — only that my little girl was already fighting.
Since her diagnosis, Gould Syndrome has reshaped our lives in every possible way. The challenges are real, but so is the resilience, the joy, and the unconditional love that Kaia brings into this world. She is nonverbal, medically complex, and requires full-time care, yet she radiates a strength that inspires everyone who meets her.
This past Gould Syndrome Awareness Day, we had the honor of meeting Dr. Rachel Vassar, a true light in this community. Connecting with her and other families gave us something we didn’t know we were missing — hope, belonging, and the comfort of being understood. For the first time, I didn’t feel alone on this journey.
The Gould Syndrome Foundation has been such an essential part of our story. It has given us community when we needed it most, answered questions when the world felt uncertain, and helped us find other parents who understand the highs, the lows, and everything in between. My hope in sharing Kaia’s journey is that another parent out there will feel that same comfort, peace, and support that this foundation has given us.
Kaia’s life is a testament to courage and faith. Every day she shows me what true strength looks like. Thank you for giving families like mine a place to feel seen, heard, and supported.
With gratitude, Kaia's mom Dominique
