Episode 32: Ali’s Life with Raegan (age 5)

In this episode, we welcome Ali to the podcast to talk about life with her five-year-old daughter, Raegan. We touch on topics that all CDKL5 caregivers can relate to. How to find therapies that work, especially when living in rural areas. Navigating the transition into the school system. Earning income when employment feels impossible. And, of course, the isolation that comes with being an at-home caregiver providing full-time and total care for your child. Ali’s descriptions of her daughter will make you smile - she’s a spitfire! Their relationship is special. After all, there’s no one quite like mom. Thanks for joining us, Ali!

SHOW NOTES

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MENTIONED IN THE EPISODE:

Barometric Pressure and Seizure Increases (article)

EPSY Seizure Tracking App

Article: How does CVI affect skill development beyond vision?

Georgia GAPP Program

Resource Guide: Educational Advocacy