Grace, born on July 4th, is our beautiful little firecracker with a spirit that shines in its own quiet but powerful way.
From early on, we sensed that something wasn’t quite right. What began as a mother’s instinct led us down a long road of appointments, therapies, and testing. At just under two years old, Grace was diagnosed with KIF1A Associated Neurological Disorder (KAND), and our lives changed forever.
KAND has impacted Grace in many ways. She faces challenges with mobility and communication, but her strength and presence are undeniable. Grace has emerging speech, and each word she says is incredibly meaningful. She communicates in her own beautiful ways—through her expressions, her energy, and the deep connection she shares with those who love her.
Grace finds joy in the simple, meaningful things. She loves her puppy, Elliot, watching Ms. Rachel, listening to music—especially Ed Sheeran and dancing in her own joyful way. She also loves school and being outside, experiencing the world around her in ways that are uniquely her own.
She has a quiet strength that teaches us more than words ever could. She has shown us patience, resilience, and a kind of love that runs deeper than anything we’ve ever known. Even on the hardest days, Grace reminds us what truly matters.
We are endlessly proud of her. She is our superhero.
We will continue to fight for her and alongside her, holding onto hope for greater awareness, continued research, and one day, a cure for KIF1A.
Grace is a real Superhero! You rock Grace!