In this episode of Rare Connection, host Joanna sits down with Tami — a teacher, advocate, and mother of 7-year-old Jonathan, who lives with a rare ANK3-related disorder. Tami shares her family's diagnostic journey, how Jonathan's multiple conditions impact their daily life, and how she balances caregiving with her work in early childhood education.
We discuss:
- Jonathan’s rare disease diagnosis and overlapping conditions (including hypotonia, autism, ADHD, and more)
- The emotional and logistical challenges of raising a child with multiple complex needs
- Tami’s insights as a teacher working with children ages 6 weeks to 5 years old
- Feeding and nutrition struggles, sensory issues, and strategies that help
- The power of advocacy and community support
- Tami’s involvement with Wichita’s Littlest Heroes, Meaningful Life Foundation, and Challenge Games
Whether you're a parent, caregiver, educator, or rare disease advocate, this episode offers insight, encouragement, and practical wisdom.
🔗 Links & Resources
- Wichita’s Littlest Heroes: https://www.wichitaslittlestheroes.com
- Meaningful Life Foundation: https://www.meaningfullifefoundation.com
- Challenge Games: https://www.challengegames.org
- Join the Rare Connection Facebook Group: [Facebook Group Link]
- Support the Show: [Your Buzzsprout “Support the Show” link]
- Send Me a Text: [Your “Send Me a Text” link]
👕 Shop Awareness Merch
Check out the t-shirt I designed to raise awareness for invisible disabilities and rare diseases — available for worldwide shipping: [Bonfire merch link]
📱 Follow & Subscribe
- YouTube: Rare Chef
- Podcast: [Rare Connection]
- Facebook, X, LinkedIn: @RareConnection
🧠 Mental Health Support
If you or someone you know is struggling, call or text 988 for the Suicide & Crisis Lifeline — available 24/7 in the U.S.
& so much moreA bi-monthly podcast where we share the stories of our Caregivers, patients and...
Listen on: Apple Podcasts Spotify
Popular Podcasts
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.