A diagnosis changes everything, and nothing.

When you learn that your child has a mutation on the CDKL5 gene that is likely causing their symptoms, you may feel relieved that the diagnostic journey is finally over. You may feel shattered by the results. Or you may have a variety of other feelings that seem to change by the day.

However you feel, we get it.

Whether your feelings are pleasant (relief, motivated, gratitude) or unpleasant (shattered, despair, heartbroken), know that you are not alone. There are people all over the world whose children are living with CDKL5 deficiency disorder. And while this life has challenges and heartache, it also has joy. You just have to find it.

This free eBook is for you, our fellow CDKL5 moms and dads. It is intended to give you an introduction to CDKL5 deficiency disorder in an easy-to-read format. Perhaps the information you learn here will help you have discussions with your child’s medical team or give you language you can use when sharing the diagnosis with your friends and family.

You don’t have to face this diagnosis on your own. You can find members of our CDKL5 community all over social media, in medical publications, online, and sometimes even in your own backyard. If you need help connecting, please let us know.

Chances are we can help.