My great Granddaughter Eyasa Rae

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My great granddaughter, Eaysa Rae, has CDKL5.  She is so beautiful and I want to find out as much as I can to help her and our family understand what we can do to help her enjoy her life and be happy. She has a great supportive family and her daddy is wonderful with her.  She has physical therapy at home and also at clinic twice a week.  She has seizures and is taking medication to help her with them.  WE belong to a supportive group and it is wonderful to read how others are getting along and what they do to help the CDFL5 person with all the difficulties they experience.  By joining Maps we thought maybe we could find out if there is someone in Wisconsin that has this disease too. This is such a new disease that things are not known yet, but research is going on and perhaps an answer can be found as to why and what can be done to help our CDFL5 people.