In this heartfelt episode of Child Life On Call, host Katie Taylor speaks with Kate, a devoted mom, advocate, and founder of Brave Bears Club. Kate shares her powerful journey navigating her daughter Charlotte’s diagnosis of infantile spasms—a rare and devastating form of pediatric epilepsy. Diagnosed just weeks before Kate gave birth to her second child, Charlotte’s condition turned their world upside down and launched Kate into action.

💜 About Our Guest: Kate from Brave Bears Club

Kate is a mom of two, a former healthcare administrator, and founder of the Brave Bears Club—a mission-driven initiative supporting children facing EEGs and epilepsy care. Inspired by her daughter’s bravery, Kate created a child-friendly storybook and a comfort bear to reduce fear and increase understanding for families navigating epilepsy. She also serves on the Child Life On Call Parent Advisory Board and collaborates with the Pediatric Epilepsy Research Consortium to advance advocacy and research.

🎧 In This Episode, You’ll Hear:

• How Charlotte was diagnosed with infantile spasms at 22 months—well beyond the typical age of onset—and the emotional toll it took on Kate as a pregnant mom.

• What parents should look for when they suspect something isn’t quite right, including the importance of recording symptoms and advocating for neurology referrals.

• Why infantile spasms are often overlooked and misunderstood—and how that needs to change.

• The emotional and physical challenges of treatment, including medication side effects, therapy overload, and the uncertainty of outcomes.

• The inspiration behind Kate’s inclusive book CharBear Keeps Dancing and the development of the EEG comfort bear to help children prepare for testing through play.

• The importance of peer support, connection with other parents, and the gap-filling work being done by advocates like Kate.

🧸 About Brave Bears Club

What began as a simple prototype bear to comfort Charlotte during EEGs has grown into Brave Bears Club—a national movement collaborating with hospitals, care teams, and international partners. The club offers:

• EEG comfort bears

• Inclusive children’s storybooks

• Educational kits to help children understand and prepare for procedures

• Support for advocacy and epilepsy research

💻 Visit: www.bravebearsclub.com
📚 Get the book: CharBear Keeps Dancing available on Amazon in English, Spanish, and French
📱 Follow Kate on Instagram: @bravebearsclub

🔑 Key Takeaways:

• Infantile spasms can present subtly and may be dismissed—trust your instincts and advocate for specialist care.

• Video recordings are crucial tools to help pediatricians and neurologists understand what your child is experiencing.

• Connecting with other families who’ve been there offers irreplaceable validation and comfort.

• There is a huge need for better awareness, earlier diagnosis, and expanded treatment options for IS.

• Empowering children through play, books, and preparation tools can make medical experiences less traumatic.

💡 Resources Mentioned:

• CharBear Keeps Dancing (book)

• Brave Bears Club EEG Comfort Bear (coming soon)

• Pediatric Epilepsy Research Consortium

• Child Life On Call’s app: SupportSpot

Special Offer for Podcast Listeners:
Get a full year of access to the SupportSpot app for just $19.99. SupportSpot provides child life resources to help your child understand and cope with medical experiences—available on iOS and Android.

🛒 Download SupportSpot

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