Tina Jackson shares caregiving journey in new rare disease book

By AI, Created 9:41 AM UTC, May 20, 2026, /AGP/ – Tina Jackson and her daughter Tionna “Miss T” Jackson are featured in a new book of letters for caregiving moms, turning a 30-year rare disease journey into a message of hope and practical support. The project aims to reach mothers facing complex medical diagnoses with community, perspective, and encouragement.

Why it matters: - The book is aimed at caregiving mothers who are navigating a child’s life-altering diagnosis and need emotional support, practical perspective and community. - Jackson’s story centers on rare disease caregiving, disability inclusion and family advocacy, offering a public example for parents facing medically complex journeys. - The project comes through Blue Hat Publishing and nonprofit We Are Brave Together, linking personal storytelling with a support network for caregiving mothers.

What happened: - Tina Jackson and her daughter Tionna “Miss T” Jackson are featured contributors in “Suddenly Brave Together: Letters to Caregiving Moms at a Defining Moment in Their Lives.” - The book was published by Blue Hat Publishing in partnership with We Are Brave Together. - Jackson’s chapter covers more than 30 years of caregiving for Miss T, who lives with a rare genetic disease and uses an Augmentative and Alternative Communication device. - Jackson said writing the letter gave her relief because she could finally share the family’s journey publicly. - Jackson is the founder of Kids Rare Care, which supports mothers new to caregiving on complex medical journeys.

The details: - The book gathers experienced caregiving mothers whose children have faced serious diagnoses and who want to speak to their younger selves. - Jackson described the diagnosis experience as a moment that changes plans, expectations and identity. - Jackson’s work includes disability inclusion training, legislative advocacy and collaboration with the Preemie Advocacy Network. - Jackson and Miss T often speak together as a duo, sharing what resilience and purpose look like in a family dealing with rare disease. - In a video promotion for the book, Jackson urged parents to focus on a child’s progress rather than diagnosis or labels. - Jackson said faith shapes her approach to caregiving and helps her accept that she can influence the journey even if she cannot control the outcome. - Kids Rare Care says its mission is to help caregiving mothers lead their child’s journey with calm, courage, clarity and confidence. - We Are Brave Together says its mission is to protect the mental health of caregiving mothers of children with disabilities, medical complexities and neurodivergence. - We Are Brave Together provides support groups, retreats, educational resources, online tools and the Brave Together podcast.

Between the lines: - The book frames caregiving as more than crisis management. It treats it as a long-term identity shift that can build leadership, advocacy and community. - Jackson’s emphasis on faith and progress reflects a broader message common in caregiver support spaces: hope is often built through small wins, not cure narratives. - The partnership between a publisher and a caregiver nonprofit suggests the book is meant to function as both a literary project and a practical support tool.

What’s next: - Jackson is expected to continue using speaking, advocacy and family storytelling to support caregivers facing rare disease and medically complex diagnoses. - We Are Brave Together will continue offering programming and resources for caregiving mothers through its community and podcast. - More families may use the book as a peer-to-peer resource for encouragement at the start of a caregiving journey.

The bottom line: - Jackson is turning a private 30-year caregiving journey into public guidance for other moms who need hope, language and community at a difficult moment.