An Unexpected Diagnosis at 22 Months: Infantile Spasms and Advocacy [REPOST] (264)-Kate's Story
Release Date: 07/30/2025
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info_outline“What started as a terrifying diagnosis became a mission to help other families feel seen, supported, and brave.” – Kate, founder of Brave Bears Club
In this reposted and newly updated episode, we revisit Kate’s emotional and empowering story as she shares her daughter Charlotte’s unexpected diagnosis of infantile spasms (IS) at 22 months old. What began as a terrifying medical journey transformed into an advocacy movement—Brave Bears Club—that now supports children with pediatric epilepsy around the world.
Kate reflects on the early signs of IS, how her instincts as a mom led to a critical diagnosis, and what life has looked like navigating treatments, therapies, and the unknown. You'll also hear how she turned her experience into tangible tools of hope: an inclusive children’s book and EEG comfort bear to prepare kids for their medical experiences.
Key Takeaways:
✅ Learn the early warning signs of infantile spasms
✅ Hear how Kate coped while pregnant with her second child
✅ Understand the emotional rollercoaster of IS treatment
✅ Discover how play and preparation inspired the Brave Bears Club
✅ Get practical advice from a parent-turned-advocate
Timestamps:
[03:00] Meet Kate: From Massachusetts to Colorado and back again
[04:00] Diagnosis during pregnancy: Receiving life-changing news at 8 months pregnant
[06:00] Trusting her mom instinct and the challenge of being dismissed
[08:00] What to watch for: Rhythmic, involuntary movements and why video is essential
[11:30] Comparing IS to SIDS awareness and the need for change
[15:00] Two-thirds of kids don’t respond to first treatments—Kate’s road to success
[18:30] Creating the book: Helping Charlotte and others understand IS
[25:00] Turning fear into empowerment through play and preparation
[30:00] Where to find the book and stay updated on Brave Bears Club
🧸 Resources from Kate:
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Follow on Instagram: @bravebearsclubco
Share This Episode
If you know a parent, grandparent, or pediatric care provider who is navigating infantile spasms and seizures—please share Kate's story. It’s a powerful reminder that no one is alone in this journey. A single message or text could offer the hope and strength someone needs right now.
📩 Copy this episode link and share it in your support group, hospital team chat, or parenting forum.
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