Scarlett Juniper Jones is our amazing and wonderful daughter who passed away June 14, 2021 from complications of her congenital heart defects and resulting surgeries. 

She fought long and hard- yet always kept us laughing with her sweet smile and mischievous personality. 

Shortly after Scarlett’s birth, when we received her genetic diagnosis, we were introduced to Unique, a small charity dedicated to supporting families living with rare chromosome disorders. Through Unique, we were connected with the online support family we needed for everything with Scarlett. Knowing there are other people similar to Scarlett gave us hope and we want to give back to help support those in similar situations.

Scarlett had a microdeletion of her 5p chromosome and a microduplication of her 6p chromosome. These small changes in her genetic makeup had a profound effect on her medically- the most prominent issues were congenital heart defects, chronic kidney disease, cervical spine stenosis, hearing loss, and feeding difficulties. Despite these challenges, she was an amazing girl who grew to run, jump, talk, sing, and love with her full being. 

Scarlett touched many people in her short life and showed us all that unicorns do exist. She taught us to love endlessly and support one another the best we can.

We miss you dearly Scarlett and want your life and your legacy to help others like you.