World map of CDKL5


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CDKL5 stories


KILEY MARIE FROM NY


I am Kiley's mom Tina. Kiley was born in June of 06. In December of 06, she received a diagnosis of infantile spasms, etiology unknown. We went thriugh Acth, keppra, klonopin, depakote, vigabitrin, sabril, ketogenic diet and nothing controlled the se...

Views: 424 May 23, 2017, 4:46 PM by Tina

MY GREAT GRANDDAUGHTER EYASA RAE


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 da...

Views: 386 May 24, 2017, 5:09 PM by Elaine

HOPE4HARPER


My name is Harper Elle Howard, but you can call me Harperpotamus.  Although my experience was only 5 years long, my story lives on through the millions of people who suffer from epilepsy, recurrent seizures, and the rare disorder, CDKL5.    &...

Views: 327 Jun 5, 2017, 12:50 PM by Penny

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