Set in Naples, Florida, Twisting Legacy tells the story of Ava, a woman coming to grips with the diagnosis of an incurable, hereditary illness and the lengths to which she goes  to protect her loved ones from learning several stunning secrets she vows to take to her grave. 

 

An estimated 30,000 people in the U.S. have the same disease as the protagonist. Those numbers will rise as approximately 200,000 more individuals are at risk of inheriting the disorder from an affected parent. One of the largest populations grouped under the heading of rare hereditary diseases, afflicted individuals wait not only for a cure but also for help in meeting their clinical needs. In the meantime, family members shoulder most of the caregiving responsibilities that can last  ten years or more.

 

Twisting Legacy brings this genetic disease into focus through a story that makes readers smile, cry, celebrate, and hope. Patients, their families, and the medical community are eager to see the attention the book will draw and optimistic that it will spark renewed vigor in the search for better ways to manage the disease and perhaps even find a cure. To assist in this effort, the author pledges to donate 20% of the 2019 profits from her book to one of the several nonprofit organizations that support research into the illness.

 

As a young nursing student assigned to a facility for patients with chronic disorders, the author encountered this genetic illness for the first time. The courage demonstrated by her severely debilitated patient made such a lasting impression that it became a primary impetus for her book.

                    

“Compulsively readable and deeply heartfelt, Twisting Legacy casts a poignant, illuminating light on the scourge of one particular genetic disease and the courageous people who are forced—every day—to deal with its inhumane ravages.”