Rory Belle's Story

Rory Belle's last real smile. 

Her smile disappeared as NARS1 took over.

Current Age:  Died at 17 months old 

Age/year of NARS1 diagnosis: 9 months/2020

State or Country: Colorado, USA

What is the hardest part of your day? Living everyday without my beautiful and courageous little girl.

What does your child struggle with? When Rory was alive, she struggled finding comfort and peace. Rory never uttered a word. She never sat on her own. She required a feeding tube to get daily nutrition. She had progressive seizures, spasticity, liver failure. Her life was more struggle, than joy. 

What brings your child joy? Rory LOVED walks in her stroller or baby carrier, her penguin paci (pictured here), soft jazz music, the vibrations of a guitar, her brother talking/singing to her, the softness of her blankets, the sound of the ocean. All the rhythm, beauty, and sunshine in the world.

What do you hope for your child?  Our hope is that through The Rory Belle Foundation, other kids with NARS1 have a chance to live in their joy EVERYDAY and to not struggle with the simple things in life.