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:
Whether you're a parent, caregiver, educator, or rare disease advocate, this episode offers insight, encouragement, and practical wisdom.
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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 dis
Listen on: Apple Podcasts Spotify
