Meet The Johnston Family


Our little Naomi Elise Johnston, was born on January 25,2018. She came to this world a little smaller (4lbs 3oz) but that hasn’t stopped her flight one bit. She is the second of 4 girls in her family! Scarlett (4), Naomi (3), and Isla & Halle (1). Her Daddy, Trey works for Grainger and her Mommy, Chrissy is a Hairdresser.

At one and a half years old she was diagnosed with CTNNB1 syndrome. At first our world stopped. Our geneticist specialist couldn’t give us much more than a diagnosis. We were puzzled and more than anxious to find answers. Little did we know that by three years of age who would have answers, a community of families, and tremendous support . Each day presented us with new challenges but also a ton of encouraging milestones. We can say for a fact that the more Naomi gets exposed to, the more she develops. Naomi is a bright and shiny Beacon throughout our day. Her tenacity to figure it out whatever the movement might be in Physical therapy or how a word might be pronounced is astonishing. Each day she teaches us more than we teach her. We are beyond blessed to call ourselves CTNNB1 parents.

Our focus right now is maximizing Naomi’s development through all her therapies. Naomi just took part in a three week program at Napa Therapy Center in Austin, Texas. Naomi loves learni