Finding the Balance with CDKL5

“Mommy, I had a dream you went to heaven” On the way to school Friday morning, Lily starts a discussion on dying and an empty world.  I’m seriously glad I have at least 15 minutes to direct this conversation.  I’ve learned you have to be ready...

BEAUTIFUL CDKL5 EYES

TODAY WAS AN AMAZING DAY!! A day Harper has been waiting a year to experience…. TODAY HARPER HAD HER DIGITAL EYE GAZE COMMUNICATION DEVICE TRIAL!!! Thank you Easter Seals North Texas,  the Retina Foundation, and Pediatric Opthalmology P.A., PlayWisely and many other...

CDKL 5 WISHES for 2013

I’m sorry that I’ve been absent a few days…. with no New Year pictures to post.  The seizure news from the doctor on New Years Eve had me very appreciative of his willingness to spend time on Harper’s case and notify us immediately, but left me...

2012: a CDKL 5 Year in Review

Dear Supporters: We want to thank you for all you have done in helping us get closer to reaching our $200 thousand dollar goal for the Seizure Research Project.  Thanks to your generosity we have funded almost ¾ of the project.  The remaining $60 thousand is due by...