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Site © 2017 par Anthony W. Rose (anthony.rose@ctnnb1.org) pour la sensibilisation mondiale au syndrome du CTNNB1. L’information présente sur ce site ne se substitue pas à un conseil médical personnalisé. Veuillez consulter un clinicien qualifié pour toutes questions concernant le diagnostic génétique, la gestion de la maladie et
la santé.

Meet Riley

This is Riley she is 6 years old and lives in Texas. Riley is currently in knee braces after switching from AFOs. She has vision problems but hates wearing her glasses. Mom and dad noticed Riley has developmental problems at 6 months old when she wasn’t meeting her milestones. She was diagnosed with microcephaly and GDD. At 6 years old she is still nonverbal and communicates using her iPad and hand gestures. She’s loves bubbles, sensory toys and riding her bike. She is currently attending school and is in kindergarten. She also has speech,occupation and physical therapy. She is a joy to have in our family and such a happy girl. (Updated: 1/7/2020)

 

Story submissions are accepted during January and June.  Email your stories and photos to info@ctnnb1.org.