is a documentation of the personal lives of courageous kids who have rare genetic conditions and their families who love and support them at all cost. 1 in 10 Americans are living with a rare genetic condition. The conditions that rule the lives of these families are often overlooked by society, but for millions of people it is a matter of foremost priority. This book sheds an important and compassionate light on these existences.
Life often presents challenges that seem insurmountable. Children are not exempt from this, but often through their innocence and will we can find inspiration and hope. An Ordinary Day displays unforgettable photographs set against intimate conversations, documenting the lives of 27 children living with rare genetic conditions.
Readers will fall in love with these children, share in their struggles and victories, and celebrate the life-affirming spirit captured in every image. The book invites us to connect with kids like Ethan, a nonverbal 7-year-old who learns to sign to communicate his needs, 5-year-old Madison who has taken her first steps after years of crawling, and Jonathan, a 9-year-old boy who finally learns to eat with a spoon after many failed trials. Tasks often taken for granted, are profound triumphs for children afflicted with rare genetic conditions.
The every day moments captured in An Ordinary Day inspire awareness and empathy, while highlighting the commonalities between families with rare genetic conditions, and more deeply between us all. Poignant and revelatory, An Ordinary Day illuminates what it means to be a family.
Title:An Ordinary Day: Kids with Rare Genetic Conditions
Publisher:powerHouse Books, 2017
provide forty- five personal accounts of people who have been forever changed. These stories offer a challenging look at survival, and in many cases, a cure. One out of every twenty-six people will have epilepsy in their lifetime. It can come when you least expect it, and no one is exempt from its grasp.
Presented by Sofie’s Journey, this beautiful, rich color, hardback book contains personal stories as told by the patients, family members, and caregivers. Each story features amazing, introspective photos which compliment and tell the story as well as the written words.
Please consider donating one or more copies of this book to an epilepsy specialist, neurology center, or other business for the purpose of spreading awareness. This can be done in the name of an individual or company.
Title: After That Day: Stories of Epilepsy
Photographer: Karen Haberberg
Price: $49.95 (includes shipping to U.S.)
*International shipping available