The meaning behind our logo

Tribute to Coconut

Our journey began with the birth of our first granddaughter in Hawaii—a moment that changed our lives forever. From the instant we saw her, we knew she was something special. She was, without a doubt, the most beautiful baby we had ever seen—perfect in every way, with a smile that melted hearts and a presence that brought joy to everyone around her. In search of the perfect nickname, we began calling her Coconut, a tribute to her Hawaiian roots and sweet, spirited nature.

While our Coconut is perfect, she was not born without challenges. Early on, we suspected she might face some hurdles, possibly related to sensory processing or ADHD. But over time, our family received a diagnosis we hadn’t anticipated—4q Deletion, specifically involving the ANKRD17 gene. This rare chromosomal mutation affects fewer than 1 in 100,000 individuals, and because the research is still in its infancy—only identifiable since 2021—much remains unknown about its long-term impact. Access to testing and information is often limited by insurance and geographic barriers, leaving many families in the dark.

But Coconut’s diagnosis does not define her. She is so much more than a string of letters and numbers on a genetic report. She is beautiful, witty, resilient, incredibly intelligent, and kind beyond words. She may be small in stature, but she has the heart of a giant.

We created the More Than a Diagnosis initiative to honor her—our Coconut—and to ensure that other families facing developmental challenges never feel alone. Our mission is to learn, share, and advocate. We are committed to raising awareness about 4q Deletion and ANKRD17, supporting research, and building a network of resources for families navigating similar paths.

This initiative is our way of turning uncertainty into empowerment—of preparing not only for Coconut’s tomorrow but helping other children and families find their strength, their voice, and their hope.

Because every child deserves to be seen for who they are—not just their diagnosis.