A Young Girl's Journey with CDKL5 Disorder

Author-Avatar Kelly Fonner

5/31/2019 7:36 PM

On this YouTube Channel you will find over 20 videos that Zoe's family has collected to map out her journey since the signs of her diagnosis started during infancy. There are several early videos from infancy through age 2 and then each year since the age of 5, there is a compilation of her year. You will follow her through therapies, through parties, through the use of innovative walking gate training with a bot. Her communication modalities have ranged from sounds, to symbols, to sign language. 

For last few years, Zoe's father has created a video compilation each year that represents her best moments and milestones from age.

From his words with this year's video... "With each of these videos there is always something new and special to see. This year it is Zoe's progress with communication and independent walking. She has learned her first sign language sign - for "eat" - and also how to use it appropriately to indicate when she is hungry. You will also see how her independent walking is improving, if only modestly. She is now requiring less assistance with balance as she takes steps. She has also shown improvement with keeping her balance while standing still on her feet, grasping objects, waving "hi", and vocalizing a few words including "hi". (You'll also notice that Zoe is wearing casts in some scenes - she did serial casting this year in order to help her feet and ankles back into an appropriate position.)

For those who may not know, CDKL5 disorder is an extremely rare genetic disorder causing very serious developmental delays, seizures, gastrointestinal issues, and a host of other complications. There are currently no treatments and no cure. If you'd like to support research and hope for a healthier future, please visit or to make a donation in Zoe's name."

Their You Tube Channel is open to freely join. They have over 4,600 subscribers!

Gestures,Body movements,Manual signs,Early sounds/vocalizations (not speech),Obtain,Makes choices,Shows affection,Obtains more of something,Requests more of an object,Level 3. Unconventional Communication,Level 4. Conventional Communication,Parent/Family Member,Occupational Therapist,Physical Therapist,Intervention Strategies,Family

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