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Allison's Story 


Born: 2015 / Age: 8

Country: United States 

Journey to diagnosis

It was a long journey to Allison's CUL3 diagnosis. Allison was born at a low birthweight and spent time in the NICU. We initiated Early Intervention services and quickly learned that she was not meeting any developmental milestones. She was diagnosed with several neurodevelopmental conditions, including: Developmental Motor Coordination Disorder, Childhood Apraxia of Speech, and a mild form of Cortical Visual Impairment (CVI). Aside from a mild case of hydronephrosis diagnosed at birth and amblyopia, Allison is a healthy little girl. 


Allison is a happy, funny and incredibly empathetic 8-year-old girl. She loves school, arcades, music and seeing plays/musicals. She loves riding horses, soccer and reading books to her parents.

We did a series of genetic testing and finally received the CUL3 diagnosis in 2021. Allison was put on a rigorous schedule of Speech, OT and PT at an early age, so this diagnosis did not alter our course of treatment. However, it was a relief to finally have answers. These outpatient therapies have helped Allison tremendously. Allison also has a complex learning profile and our goal right now is to find her the support and resources that will allow her to maximize her academic potential. I'm grateful that I found this community and know that we're no longer alone on this journey. I'm hopeful that one day Allison might be able to meet someone else who is just like her!

Last updated 2023

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