Willow Alexis Hemsley

Willow Alexis Hemsley

December 27, 2016 – August 14, 2025

Our beloved Willow Alexis Hemsley returned to heaven after a brave and beautiful battle with Niemann-Pick Type C. Born on December 27, 2016, in Layton, Utah, Willow brought an immeasurable light into the world that touched everyone who had the privilege of knowing her.

Willow is deeply loved and will be forever missed by her dad, Shane Hemsley; her mom and bonus dad, Krystal and Shadd Samuelson; her adoring sisters, Kennedy and Ainsley Samuelson; and her brother Nic, his wife Janel, and their sons Logan and Miles. She also leaves behind a village of extended family, friends, caregivers, and advocates who stood by her side with love and unwavering support.

Willow was a true warrior—fierce, joyful, and full of personality. Despite the many challenges she faced, she lived each day with a smile, a spark, and a strength that inspired all who knew her. Her journey with Niemann-Pick Type C was one of incredible courage and purpose. Willow became a voice for the voiceless, advocating for research and awareness, including sharing her story in front of the FDA to help secure the first approved treatment for NPC.

She loved Moana, dancing with Miss Shellie, riding her gentle Daisy horse, traveling the world, and spending her days with those she loved.

To everyone who loved Willow, thank you. Your care carried her through the hardest days. A special and heartfelt thank you to her beloved “AA,” Alexis, who gave her comfort, dignity, and love right up to the very end.

Willow taught us how to fight with grace, how to love without condition, and how to live fully in the moment. Though her time with us was far too short, her impact is eternal.

Services to celebrate Willow’s life will be shared with friends and family in the coming days. In lieu of flowers, the family asks that donations be made in Willow’s honor to the Ara Paraseghian Medical Research Fund supporting Niemann-Pick research and rare disease advocacy.