For Families

This section is dedicated to children, families, siblings, relatives, friends, and care givers who are affected by CDKL5. You are not alone. Visit the Support page to connect with other families affected by CDKL5.

In the words of one of our parents, remember that "you don't know how strong you are until you have to be.” Let's be strong together.

Children's Blogs

Amber: http://cdkl5amberandus.blogspot.com/

Hannah: http://www.freewebs.com/hannahlouisesmith/
Lily: http://lilyannablu.blogspot.com
Alexis: http://alexisamber.blogspot.com
Asha & Bree: http://www.ourcdkl5journey.blogspot.com
Leah: http://www.leahrosebarnes.blogspot.com
Jennifer: http://www.jensjourneynow.blogspot.com
Kiera C.: http://cdklklc5.blogspot.com/
Mia: http://www.mialoudon.co.uk
Lily Kate: http://www.thepurdypeople.blogspot.com
Gunner: http://gunnersstory.blogspot.com/
Vegard: http://vegardslife.blogspot.com/

Emmalin: http://emmalinsjourney.blogspot.com

Honor: http://misshonorsjourney.blogspot.com/
Harper: http://www.caringbridge.org/visit/howardfamily

Imke: www.imkejanssen.eu/

Maria Carolina: http://mariacarolinacdkl5.blogspot.com/

Jade: www.jadescdkl5journey.blogspot.com/

Donations

Partner Login

Glyn's Gift

Rare Disease Day USA

The IFCR is now a member of NORD

For Families

Children's Blogs