Hello @sunricez, Welcome to Connect. I can't imagine how difficult it must be for both you and your daughter. You are not alone with your concerns for your child and I'm hoping other members may have some experience with such a rare condition as ARHGEF9 gene mutation. I was able to find some research on the condition that might be helpful including the following story.

-- Ivan's Story - ARHGEF9 Gene Mutation: https://www.rarediseaseday.org/heroes/ivans-story/.

I also found another site - Simon's Searchlight, that has some support and other information to learn more about the condition that might be helpful: https://www.simonssearchlight.org/research/what-we-study/arhgef9/.

I did see a few research study opportunities in the Simon's Searchlight link above. Have you looked into any research opportunities for treating your daughter?