The mission of HCU Network America is to help patients with HCU and related disorders manage their disease and to find a cure. These are books that were reccomended to learn more about a variety of genetic conditions. You can learn more about their work at hcunetworkamerica.org
No Day Wasted: The Adam Settle Story
About the Book
Written by: Susan F Stallings
Waste no day to achieve the impossible! When Pennsylvania started testing newborns for metabolic diseases, Adam Settle was one of the first to be diagnosed with Cobalamin-C Deficiency. Legally blind and mentally delayed, Adam never let his limitations hold him back from accomplishing his dreams. His love for people and his desire to help others comes through the pages of this book. Whatever has been holding you back, this book will help you charge through the obstacles you face to achieve the impossible. Adam’s story will inspire, encourage, and give you hope.
This book is not currently available through interlibrary loans
Rare Like Us: From Losing My Dad to Finding Myself in a Family Plagued By Genetic Disease
About the Book
Written by: Taylor Kane
Taylor Kane was a daddy’s girl from the moment she was born, smiling and cooing whenever her father was around and refusing to sleep until he held her in his arms. But shortly after she turned three years old, the unthinkable happened. Her father was diagnosed with a rare, genetic disease for which there was no cure. It wasn’t long before he began to experience a number of bizarre and frightening symptoms, and young Taylor watched helplessly as the disease ravaged his body and mind, transforming him into a shell of the father she once knew: a man unable to walk, talk, swallow or understand what was going on around him. A man who no longer recognized her.
Fast forward five years. Her beloved father now gone, nine-year-old Taylor is dealt another devastating blow when she learns that she is a genetic carrier of the disease that took her father’s life. Not only will her future children have a fifty percent chance of inheriting the disease, she, too, faces the risk of developing symptoms of her own in the future.
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Laughing at My Nightmare
About the Book
Written by: Shane Burcaw
With acerbic wit and a hilarious voice, Shane Burcaw’s Laughing at My Nightmare describes the challenges he faces as a 21-year-old with spinal muscular atrophy. From awkward handshakes to having a girlfriend and everything in between, Shane handles his situation with humor and a “you-only-live-once” perspective on life. While he does talk about everyday issues that are relatable to teens, he also offers an eye-opening perspective on what it is like to have a life threatening disease.
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Breath from Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever
About the Book
Written by: Bijal Trivedi
From science writer Bijal P. Trivedi, Breath from Salt chronicles the riveting saga of cystic fibrosis, from its ancient origins to its identification in the dank autopsy room of a hospital basement, and from the CF gene’s celebrated status as one of the first human disease genes ever discovered to the groundbreaking targeted genetic therapies that now promise to cure it.
Told from the perspectives of the patients, families, physicians, scientists, and philanthropists fighting on the front lines, Breath from Salt is a remarkable story of unlikely scientific and medical firsts, of setbacks and successes, and of people who refused to give up hope—and a fascinating peek into the future of genetics and medicine.
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The Adventures of Ruby Pricklebottom: Book 1: Ruby Has PKU
Written by: Anna & Brandon Parker
Illustrated by: Steven Bybyk & Natalie Khemelovska
Ruby Has PKU chronicles Ruby and her family’s journey into the world of Phenylketonuria (PKU). After finding out that Ruby was born with the rare metabolic disorder, Ruby and her family must learn how to manage the PKU diet in order to keep Ruby healthy and happy. Follow the Pricklebottoms’ journey from diagnosis to first day of school, and find out how Ruby manages to be extraordinary!
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Frankie Goes to Camp: A PKU Friendly Adventure
About the Book
Written and Illustrated by: Kacie Foos
Join Frankie and her family as they travel to Maryland for Summer Camp. Frankie was born with a metabolic disease called Pheynlketonuria or “PKU.” This Summer Camp is for families just likes hers! From Kayaking, to Nature Walks, to conquering a Ropes Course, the adventure never ends. Celebrate with Frankie as she catches her first rainbow trout, and roasts marshmallows late into the night with her new friends. The fun never ends with this Ninth release of the beloved “Frankie Books.”
This book is not currently available through interlibrary loans