United Kingdom
13 years old
January 15, 2020


Callie received her Syngap1 diagnosis in October of 2019, after years of searching for answers! Callie has also been diagnosed with epilepsy, ASD, hypotonia, and ataxix CP. Although we know now these are related to Syngap1.

She has changed our families life in so many ways and I am so grateful for her. Callie is our gift!

Callie is generally very happy but she does have days and moments of struggle. Fatigue, social situations, and communication prove to all to be difficult for her. She has been working hard on all of the areas she struggles. Callie has finally started to use a high tech communication device and is learning her colors! Soon we’re getting a device with the program proloque2go and the easiest way to put it is “ I’m so happy!”.

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