When her toddler is diagnosed with a rare genetic disorder that disrupts communication, Amanda Gale must learn how to interpret sound without language.
After being told “good luck” was the only plan for her daughter’s rare disease, a mother finds a path forward for her family and others around the world.
"This Tiny Voice Inside My Head," by Liat Vaknin-Nisan
Liat Vaknin-Nisan shares a defining moment from her daughter’s hospitalization, when fear, medical uncertainty, and maternal instinct collided—and her voice became essential.
"Connection Is the Most Powerful Medicine," by Nancy Musarra
When Nancy Musarra’s young son looks at his newborn sister and says, “This baby is broken,” she can no longer ignore the possibility that something is seriously wrong.
When motherhood took an unexpected turn into the world of rare disease, Ada Lio transformed from a Type A planner into a community leader—building the very hope she once searched for.
"When Will We Grow out of This?" by Sarah Chamberlin
Sarah Chamberlin is the mother of a child with a rare disease, and she finds herself torn between her instinct to focus on practical problem-solving and her daughter’s need to make sense of what her future might hold.
Having become a mother at 18, this is supposed to be the year Katie Stevens figures out who she is — but then she discovers her 12-year-old son is terribly ill.
After witnessing the disconnect between researchers and families struggling with mental illness, Kit Donohue is determined to bridge the gap between science and the people it aims to help.