On today's episode of the podcast, Katie interviews Rylee Neal who decided to become a Child Life Specialist from her past experiences being hospitalized with a heart condition called tetralogy of fallot. An experience with a Child Life Specialist during one of her...
Episode 152 | Kelly’s Story – A daughter with Epilepsy [Trigger Warning: Death]
Podcast Show Notes
This episode is full of tangible truth about what it means to be a caregiver and advocate. Kelly shares about her daughter’s epilepsy diagnosis and how it changed her entire world. After a normal pregnancy and delivery, Adelaide wasn’t gaining weight and had low muscle tone which was the beginning of her epilepsy diagnosis. Kelly became involved in CURE Epilepsy’s mission and shares how Adelaide’s spirit lives on through the work she does today.
**Trigger warning: Kelly talks about her daughter’s death in this episode**
[4:35] Adelaide’s diagnosis
[5:15] Miguel getting the call
[6:00] Moving to Chicago
[7:50] A friend’s advice
[10:35] Learning how to find your voice as a medical parent
[14:05] Talking with other parents
[16:40] Adelaide’s seizures
[17:31] Having a plan for seizures gave control over the situation
[19:08] Regression after seizures
[21:00] Accepting the reality of the situation
[22:20] Finding empowerment and advocacy through working with CURE Epilepsy
[24:51] CURE Epilepsy’s research on Infantile Spasms
[26:24] Adelaide passed away in 2019
[29:00] Adelaide’s spirit lives on with the research
[31:15] The forever connection with epilepsy families, clinicians and doctors
[33:31] Learning patience along the way
[36:00] How to connect with Kelly
Connect with Kelly
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