Jennifer Canvasser's world was shattered when she lost her son to Necrotizing Enterocolitis. Now, she's on a mission to raise awareness and support families facing the same struggles. But just as her advocacy began to gain momentum, a shocking discovery threatened to...
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
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.
You Might Also Like…
James Robinson encountered an unexpected twist in his journey as a father to a child with a serious congenital heart defect. This change, while heart-wrenching, sparked a fire within him to create a meaningful and joy filled life for his son, Nadav. As James shares...
Episode 196 | Hannah Parson’s Story – Navigating the Complexities and Challenges of Special Needs Parenting
In the journey of special needs parenting, Hannah Parsons never anticipated the unexpected twist that would forever change her path. It all began with a missing bone in her son's arm, a revelation that plunged her into a world of uncertainty and endless specialist...