Reyna's CDKL5 Cure

That crappy feeling when the hospital staff knows you even before you check in. But that's CDKL5 life. #curecdkl5 #cdkl5awareness

Remembering you.. An event to help cope loss of a CDKL5 loved one by someone who lost her sibling. Please register https://www.eventbrite.com/e/remembering-you-sharing-our-si

We learnt this the hard way too, but all parents should remember this - YOU ARE AN EXPERT ON YOUR CHILD. Don't let others dismiss you. Advocate for them. #cdkl5life #lifelessons #CureCDKL5 Penny Pennington Howard has been writing her journey beautifully, every chapter resonates with us (aka, makes me cry). <3 If you want to sign up for newsletters: https://r20.rs6.net/tn.jsp

The complexity of CDKL5 lies in dual problem - learning inability & uncontrollable epilepsy. Though slow and difficult, the learning problem can be worked on, but the damn seizures don't want to give us a break! Please, please help #CureCDKL5 asap. <3