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.
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
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