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**

[3:20] Introductions

[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

Website

Twitter

Instagram

CURE Epilepsy 

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Parents, download our free parent starter kit.

When you download our starter kit, you’ll learn how to:

• Give medicine to your child without it becoming a wrestling match
• Prepare your child (and yourself) for a shot so they can feel less anxious
• Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

Child life specialists, get affordable PDUs on-demand here.

Shop for your CLOC gear here.

Catch up with CLOC on Instagram, Facebook and meet Katie for a Q+A every Monday at 10 AM CST.

Further episodes of Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

Further podcasts by Katie Taylor, Certified Child Life Specialist

Website of Katie Taylor, Certified Child Life Specialist