Gia Grace
February 5, 2019 – December 25, 2020
United States
From Gia’s family:
What we want people to know about Gia is that she taught us to love purely. We loved every single inch of her – from those beautiful big eyes and crazy hair to her tiny fingers and toes. Some of the memories we cherish and hold so dearly are Gia’s sass; when she didn’t want to do something, we all knew it. And the way she could lock eyes with you just made our hearts melt. Her smiles reassured us how happy she was, and her leg bops always kept us smiling. Her favorite things were being held tightly, read to, and massages and tons of cuddles from her big sister Juliana and big brother Joey. She truly was the light of our lives; she is incredibly missed.
Unfortunately, Gia’s variant of KIF1A was one of the most severe and consequently, she endured so much in her short life. Every day was a fight for her to just breathe and safely eat. Even though she struggled with the basics that so many of us take for granted, she was happy, and she was so loved. She made the ultimate sacrifice, and we hope that her life can be a catalyst to change others and most importantly play a role in discovering treatment. Hearing her big sister describe her as “her hero,” makes us realize what an impact she as had not only on our lives but everyone who knew her. We have endless love for Gia, and that love is what will continue to drive us to fight for a cure.