Episode 29: Anna’s Life with Addy (age 4)

In this episode we welcome another sweetheart CDKL5 mama, Anna, on the podcast to talk about life with her four-year-old daughter, Addy. We talk about the loving relationship she has with her older sister, Charlotte, and how Addy’s personality shines through in every space where she goes. We also talk candidly about how hard decision-making and acceptance are for us as caregivers, and how finding peer support to tap into the resources you need is key. Anna has a beautiful perspective about this CDKL5 life and it was so fun hearing her wisdom.

“I’m eternally grateful for Addy and I also wish that things were easier for her. So, two things can be true at one time. We can grieve and we can rejoice at the same time, always.”

Thanks for joining us, Anna!

SPECIAL ANNOUNCEMENT! - Biscuit Bandit Dog Treat Fundraiser for the Pod! Purchase by Dec 15, 2025. Makes great gifts!!

SHOW NOTES

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MENTIONED IN THE EPISODE:

Ganaxolone (aka Ztalmy)

VNS Surgery as a Seizure Treatment

CDKL5 Parents Support Group on Facebook

CDKL5 Life Expectancy - CDD Explained

CDKL5 Life Expectancy Blog Post

LouLou Foundation

CDKL5 Centers of Excellence