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.

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.

It's hard enough to understand CDKL5 Deficiency Disorder as adults - how are we meant to explain it to kids?!

We hope that this free eBook written just for kids will help you navigate these difficult conversations. Inside you'll find:

• a child-friendly description of DNA, genes, & CDKL5

• what emotions can come up

• how a child can be a friend and ally

• coloring pages

• some tips and links for grownups

It's OK not to have all the answers. Being a listening ear and a safe person to talk to is a gift for any child.

Note: Grownups, please read through the eBook in its entirety before reading it with your young person.

There are so many benefits to feeding real food through the feeding tube.

• improved digestive health

• better nutritional quality

• increased patient and caregiver satisfaction

Blending for tube feeding is truly not difficult or complicated, but it can be intimidating at first!

In this free blended diet recipe eBook Marissa shares the methods she uses to blend for her son's feeding tube as well as some easy and nutritious recipe examples to demystify blending for tube feeding.

Always consult your doctor before making changes to your feeding regimen.