Shayanne Martin dreams of doing community health work in Zambia, but when her daughter is born with a host of medical challenges, she suddenly finds herself wondering whether the future she imagined is still within reach.
Read More"Hope for Our Entire Family," by Jenifer Merriam
Jenifer Merriam's 14-year-old daughter started dropping her pencil and her hairbrush, and struggled with her studies. Something wasn’t right.
Read More"The Bridge That Built Me," by Ivana Badnjarevic
The Old Bridge in Heidelberg became the metaphoric turning point where a mother transformed from engineer to patient advocate, building a supportive network for families affected by rare neurotransmitter diseases.
Read More"I hope my family will say it was worth it," by Michaelle Jinnette
All Michaelle Jinnette ever wanted was a big family—but when her fourth child arrives, her picture-perfect life is thrown unexpectedly off course.
Read More"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.
Read More"From the NICU to the Podium," by Ada Lio
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.
Read More"She Is Nesba," by Scotty Sims
When Scotty Sims' daughter is born something seems off to her, but everyone around her dismisses her concerns.
Read More"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.
Read More"Mad Libs" by Barbara Goodman
When her stepdad is diagnosed with a rare blood cancer, Barbara Goodman realizes her life’s work might be exactly what he needs.
Read More"Speeding Up the Diagnosis Process," by Zhandong Liu
Scientist Zhandong Liu uses AI to speed up the diagnosis process.
Read More"The Summer When Everything Changed," by Linda Martin
In the summer of 2016, Linda Martin received a call from her husband that changed her life forever.
Read More"The Gift," by Gareth Baynam
Three Aboriginal children hold the key for unlocking important medical insights.
Read More"Ben's Story," by Leah Myers
In the first few months of her baby’s life, Leah Myers worries that something is off.
Read More"Figuring Out Who I Am," by Katie Stevens
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.
Read More"The Family Curse," by Allison Peck
Allison Peck and her husband are faced with the harsh reality of the genetic disease IBMPFD when their three-year-old outruns him.
Read More"Manageable," by Amy Wood
Amy Wood struggles to cope with her son's sudden brain tumor diagnosis, and managing the lifelong effects of his benign craniopharyngioma.
Read More"Not Strong At All," by Kim McClellan
Kim McClellan reflects on her lifelong battle with recurrent respiratory papillomatosis and learns how to use her voice to fight for change.
Read More"Piece By Piece," by Kit Donahue
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.
Read More"Maybe This Is Progress," by Mary Vyas
After Mary Vyas’s son is diagnosed with PSC,, she is determined to be a living liver donor.
Read More"For King Nazir," by Lakeia Nard
Lakeia Nard fights for answers to her son's rare disease.
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