Manufacturing My Miracle: One Woman's Quest to Create Her Personalized Gene Therapy

Who lives? Who dies? Who decides? One woman's quest to save her family from a rare genetic 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 discover, personal determination, and bioethical debate. From childhood, Jill knew her body was different - her muscles 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 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 refuses to wait for pharmaceutical companies to take an interest in her ultra-rare condition. After finding an Italian scientist who will analyze her family's genome from an underground blood draw, she uses her own biotech knowledge, engineering a personalized gene therapy for just $1,500. Scientists at the University of Iowa successfully test the therapy on genetically modified fruit flies with her condition, proving its efficacy.

A deep dive into the ethical dilemmas of personalized genomic medicines, Viles explores urgent questions such as: Who deserves access to life-saving treatments? What role should profit play in healthcare? Who decides who lives and dies? Finally, as Jill stores her homemade viral vector in a freeze, next to frozen waffles, she faces the biggest question of all: should she risk her own health to safe her beloved family members who have her disorder?