Overview

Who lives? Who dies? Who decides? One woman's quest to save her family from a rare hereditary disorder and what it means for our collective genetic future In Manufacturing My Miracle, Jill Dopf Viles becomes her own researcher to solve the genetic mystery that has plagued generations of her family. She discovers a link to Olympic hurdler Priscilla Lopes Schliep and, as gene therapy costs $4.25 million per treatment, she miraculously develops her own for a mere $1,500. With her personalized cure stored in her freezer, the most critical decision becomes: should she risk her health to save her family or wait for an industry unlikely to prioritize ultra-rare diseases?

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9781538197226

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Reviews

Jill is like flowing water. In her pursuit for answers, she is an unassuming force that carves her own path through the unknown, overcoming obstacles with sheer perseverance. Jill has changed the landscape of her disease and provided hope for the future. Her story and her spirit are truly inspiring. -- Kimberly Riley Woodruff, MD, MPH Both heartbreaking and exhilarating, Jill masterfully describes the quest for truth about her rare condition, while capturing some of the hows and whys of research behind rare genetic disorders. This memoir is a testament to her methodical and inquisitive mind, as well as her resilience-Jill Viles is a scientist, period. -- Prof. Adema Ribic * University of Virginia * This riveting and eye-opening memoir transports readers into a world shaped by persistence, love, friendship, kindness, and hope. Through the author’s extraordinary perspective, we gain a deeper understanding of resilience and the power of human connection—lessons that resonate far beyond the realm of genetic disease. Without a formal degree in genetics, she has been a guiding force, encouraging others to pursue genetic testing to identify and treat Emery-Dreifuss muscular dystrophy and lipodystrophy. Along the way, she introduces us to the profound promise of the genetic revolution. -- The Dressmaker's Mirror * University of Nevada, Reno and author of The Dressmaker's Mirror: Sudden Death, Genetics, and a Jewish Family's Secret *

Author Information

Jill Dopf Viles (1974-2025) pursued her B.S. at Drake and Iowa State University in the field of biology/genetics. Vile's researching scientific clinical literature resulted in self-diagnosing herself and her father with Emery-Dreifuss muscular dystrophy (EDMD). She later received a master's in creative writing from Iowa State University and was an annual attendee of the University of Iowa Summer Writing Festival. In the course of researching her book Manufacturing My Miracle on her family's rare muscle disorder, she collaborated with scientists at the University of Iowa performing gene therapy on mutant fruit flies. Her writing appeared in John Hopkins Magazine, and her scientific work was published in medical journals Gene, Cells, and Science Advances. Jill lived in rural Iowa with her husband, Jeremy, and a lively golden retriever, Yoshi. Learn more about Jill at Jill lived in rural Iowa with her husband, Jeremy, and a lively golden retriever, Yoshi. Learn more about Jill on her website: Diyscientist.

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