Ank 3 With Tami from Kansas

Send us Fan MailIn 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 needsTami’s insights as a teacher working with children ages 6 weeks to 5 years oldFeeding and nutrition struggles, sensory issues, and strategies that helpThe power of advocacy and community supportTami’s involvement with Wichita’s Littlest Heroes, Meaningful Life Foundation, and Challenge GamesWhether you're a parent, caregiver, educator, or rare disease advocate, this episode offers insight, encouragement, and practical wisdom.🔗 Links & ResourcesWichita’s Littlest Heroes: https://www.wichitaslittlestheroes.comMeaningful Life Foundation: https://www.meaningfullifefoundation.comChallenge Games: https://www.challengegames.orgJoin 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 MerchCheck out the t-shirt I designed to raise awareness for invisible disabilities and rare diseases — available for worldwide shipping: [Bonfire merch link]📱 Follow & SubscribeYouTube: Rare ChefPodcast: [Rare Connection]Facebook, X, LinkedIn: @RareConnection🧠 Mental Health SupportIf 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 needsTami’s insights as a teacher working with children ages 6 weeks to 5 years oldFeeding and nutrition struggles, sensory issues, and strategies that helpThe power of advocacy and community supportTami’s involvement with Wichita’s Littlest Heroes, Meaningful Life Foundation, and Challenge GamesWhether you're a parent, caregiver, educator, or rare disease advocate, this episode offers insight, encouragement, and practical wisdom.🔗 Links & ResourcesWichita’s Littlest Heroes: https://www.wichitaslittlestheroes.comMeaningful Life Foundation: https://www.meaningfullifefoundation.comChallenge Games: https://www.challengegames.orgJoin 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 MerchCheck out the Support the show