Description
At four months old, Andy was dying.
For weeks, his mother, Christy, had known something was wrong. He was losing weight, crying constantly, and growing weaker by the day. But her concerns were dismissed until the night his tiny body began shutting down.
Christy and her husband, Dan, were thrust into a world of medical uncertainty they never imagined they would have to navigate. Doctors searched for answers. Their family searched for stability. And Christy began learning the painful lesson so many parents of medically complex children know too well: sometimes being right is not enough if no one is listening.
Then, four years later, their daughter, Katie, was born. When familiar signs began to appear, Christy recognized what others did not. History was repeating itself. But this time, she knew what was at stake, and she refused to wait for someone else to see it.
What began with Andy’s first medical crisis became a twenty-year journey through rare disease, disability, education systems, unanswered questions, unexpected discoveries, and the daily work of building a life around two children whose needs rarely fit neatly into the systems meant to support them.
Twice Rare is an intimate memoir about family, motherhood, rare disease, disability, and the quiet transformation that begins when ordinary parents learn to trust what they know. It is a story of fear and fierce love, exhaustion and discovery, isolation and community, and the power of fighting together until your children are finally seen.
Details
Publisher - Lepidoptera Codex
Language - English
Perfect Bound
Contributors
By author
Maira Leali
Catherine Buckham
Jessica L. Mason
Published Date - 2026-09-23
ISBN - 9798234195265
Dimensions - 22.9 x 15.2 x 1.7 cm
Page Count - 305
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