If your child has just been diagnosed I am sorry you are here but so glad that you have found us. Welcome to our family. Below you will find additional resources that will hopefully help you begin on this journey.

1.  Please reach out to the CDKL5 Facebook support group
This will be an invaluable resource that you will be so grateful for.  Please request admission to the group and send a message stating your child's name and age and you will be welcomed with open arms!  We look forward to you joining our family.

2. Below is a list of other blogs of families with children who are diagnosed with CDKL5.  Please consider viewing these blogs.  Children with CDKL5 represent a wide spectrum of capabilities and there is no better way to get to see the various abilities by following along in each child's journey.

CDKL5 Amber and Us
Blog for Ava Jaksha
Blog for Lily Anna Blu
Hope4Harper
Jades CDKL5 Journey
Love Peu
Moving Mountains with Madelyn
Rayleigh Bug Blog
Tanner's Journey (Georgia, USA)

3. Below is a list of Facebook pages of the children diagnosed with CDKL5.  Please consider joining them on their individual journeys and sharing in their experiences.

All in Stride Evies CDKL5 Journey
Baybe Blue CDKL5
Briar's Journey
Believe in Brooklynn
Callie's Crusaders
Carter Anderson
CDKL5 and Juan Jose
Chase's CDKL5 Journey
Erin's Life with CDKL5
Faith for Madison Faith
Finja CDKL5
Give Charlie A Chance
Hope4Ellsa
Hope4Haley
Hope4Harper
HOPE 4 Inaaya CDKL5
Hope for MaryTere
Inspiration in Isabel
Jhon Michael CDKL5
Joseph's Journey
Kerialyn Hawgood's Battle with CDKL5
Kiley's mommy on loss, grief, strength, survival
Kylee Courage
Leah's Journey (CDKL5)
Maria Carolina with CDKL5
Megan's CDKL5 Journey
Milestones for Miriam
Moving Mountains with Madelyn
Naomi our Saving Grace
Natalie Hope's Journey with CDKL5
Prayers for Braylon
Pray for Penny
Princess Libi against CDKL5
Raffael Bruna
Road to a Cure for Aria
Sonya's Story CDKL5
Team Sammy Sands CDKL5
Tia Staley CDKL5-Walk for Research Page
T___4 Tia CDKL5

4. Below is a list of YouTube accounts that share pictures and videos of their children's progress.  Please consider viewing these videos to see what our children are capable of.

Babyeblue's Videos
CDKL5 Canada
CDKL5 UK
Gracie and CDKL5
Gunner's Videos
Hope4Harper
Lily Nothdurft Videos
Vanessa's Videos


If you are a parent of a child with CDKL5 and would like a link to your blog or child's Facebook page added to this page, please email Randi at info@sonyasstory.com.