It is now our honor to announce our 10th Annual Moonbeam Caregiver Award for 2023!
Congratulations to Kayla and Zac Nakvinda of Oklahoma!
Kayla and Zac are parents to Ella, who passed away in March of 2023, from CLN1 Batten Disease, as well as two other daughters, Lilly and Lexi. According to the nomination, Kayla and Zac are loving parents who dedicated their every moment, including all the sleepless nights, to care for Ella and her siblings, despite the significant challenges that came with the diagnosis of Batten Disease. They were always a strong tag-team who helped provide the utmost care for Ella throughout her life while also ensuring the necessary balance of care for her siblings. Kayla and Zac embraced and provided opportunities for as much adventure, both big and small, in Ella’s short life as they could, from traveling out of state to visit family and going on a Make-a-Wish trip, to making all the little quality of life moments count for her and her siblings like ball games, pumpkin patches and Santa. After Ella’s passing, Zac and Kayla have continued to grow their engagement with the Batten community, offering encouragement, advice and support for fellow Batten Warriors and their families. “They are true heroes” who will never forget the fight their sweet girl endured and will never let her be forgotten.
Once again, congratulations, Kayla and Zac, and to ALL of this year’s nominees! We thank you “to the moon and back,” for striving to bring more “Time, Hope and Adventure” to Ella and her siblings, and to all of the lives you have touched and will continue to touch in the future!
