We first heard the term CDKL5 in September of 2018 - right before Leah’s first birthday. It capped off a stressful year filled with seizures, lots of medications and hospital stays on Thanksgiving, New Years Eve, MLK Day, Saint Patrick’s Day, Passover and Easter. 

CDKL5 deficiency disorder is characterized by seizures that begin in infancy, followed by significant cognitive and physical impairment. While a diagnosis of CDKL5 was pretty tough to hear, we now know what we are dealing with and are part of a small, but mighty community of CDKL5 families.  

And while Leah is saddled with this unfortunate diagnosis, she is our lovable, happy, child. Leah loves long walks, toys that blink, and a good hug. Leah is also a fighter, and working to defy her prognosis and what others define as her capabilities. Leah is aided by an army of caregivers and therapists who help her get a little bit stronger every day. BUT, still more help is required...

That help comes, in part, through the International Foundation for CDKL5 Research, which began as a group of parents whose children had CDKL5 Deficiency Disorder. Their mission is to treat and cure CDKL5 Deficiency Disorder. The Foundation is committed to funding research that will bring about treatments and, ultimately, a cure. They strive to raise awareness of this rare disorder and, above all, seek to support all CDKL5 families by providing the most current information on treatment advances and resources for how to live their best life possible. The Foundation is a parent-led, volunteer organization and their budget comes primarily from the fundraising efforts of our CDKL5 community. 

Thank you for your support of the International Foundation for CDKL5 Research and Leah!