Manufacturing My Miracle - Book Discussion

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.

Jill Dopf Viles’s genetic detective story takes readers on an extraordinary journey of scientific discovery, personal determination, and bioethical debate. From childhood, Jill knew her body was different – her muscles were weak, her tendons tight, and her body fat nearly absent. When doctors failed to diagnose her condition, she became her own researcher, diving deep into genetics in her search for answers.

Nearly thirty years ago, Jill Viles navigated an underground blood draw and genetic study with a team of Italian scientists to solve the medical mystery that plagued her family for generations. Her relentless pursuit of answers led to astonishing discoveries, including an unexpected genetic link to Olympic hurdler, Priscilla Lopes Schliep. While Jill battles a rare form of muscular dystrophy, Priscilla’s mutation, in the same gene, enhances her athleticism. Their connection, highlighted on This American Life, is just one of the many remarkable stories in this book.

As the cost of “once and done” gene therapy skyrockets–reaching an astounding $4.25 million per treatment – Jill realizes the urgency of her pursuit. She doesn’t have time to wait for pharmaceutical companies to take an interest in her ultra-rare condition. Instead, she uses her own biochemical acumen to manufacture a personalized gene therapy for just $1,050.

Viles explores urgent questions such as: Who deserves access to life-giving treatments? What role should profit play in healthcare? Who is ultimately responsible for payment-private health insurers, the government, or the patient? As Jill stores her self-designed viral vector in her rural Iowa kitchen, beside her ground beef and frozen waffles, she faces the most looming question of all: should she risk her own health to save her beloved family members who share the same genetic diagnosis by testing out the genetic therapy on herself?

Jill Dopf Viles died on June 12, 2025. Jill pursued a bachelor’s degree at Drake and Iowa State University in the field of biology/genetics. She dove into scientific clinical literature and self-diagnosed herself and her father with Emery-Dreifuss muscular dystrophy (EDMD). When expert US physicians did not agree with her diagnosis, she collaborated with geneticists in Italy and elsewhere in Europe to determine the genetic basis of EDMD and confirm her own diagnosis. Having solved the genetics mystery of her own condition, Jill was excited to pursue her passion for writing and earned a master’s degree in creative writing from Iowa State University. She taught English at DMACC and other community colleges.

While raising her son, Jill pursued research into muscular dystrophy and she made a remarkable genetic connection between herself and Priscilla Lopes-Schliep, an Olympic medalist, that likely saved Priscilla’s life. The story of Jill and Priscilla titled “Something Only I can See” has aired repeatedly on This American Life radio program on NPR.

Jill’s latest accomplishment was writing Manufacturing My Miracle, a story which chronicles the events of her life – published by Bloomsbury Publishing in July 2025. Having her story published was one of her proudest achievements, and she had looked forward to giving book readings in July 2025. In this book, Jill shares captivating chapters about her search for answers and meaning in the world of genetic research with compelling and heartfelt stories.

The author’s husband Jeremy Viles, sister Janet Albanese, and Dr. Lori Wallroth, a researcher from University of Iowa will lead the discussion.