An Ordinary Day: Kids with Rare Genetic Conditions

Poignant, powerful, life affirming – An Ordinary Day – will connect families with children who have rare genetic disorders to one another and to the world.

Rare genetic diseases are pretty common — 1 out of 10 Americans is affected, while 95% do not have an FDA approved drug treatment.

An Ordinary Day gives a voice to families raising children with rare genetic disorders. Despite the complexity of their individual circumstances, the book, featuring photographs, interviews and a list of informative resources, captures family life in all its simplicity and humanity.

An Ordinary Day displays photographs set against intimate conversations, presenting the stories of 27 families living with children with rare diseases. Readers will fall in love with each child, share in their enormous struggles and small victories, and celebrate the life-affirming spirit captured in every image. Throughout the pages, a trove of treasure is revealed, a narrative of struggles failed and battles won. These brave children include Ethan, a mute child, as he learns to make his first sound; Jonathan, a 9- year-old, as he finally is able to eat with a spoon after many failed trials and; Maddy, a 5-year-old, as she takes his first step after years of crawling. These are all tasks that are taken for granted by families and children without these disorders, but are immense accomplishments and triumphs for children with rare genetic diseases. The intimate portraits in An Ordinary Day will inspire hope, empathy and appreciation in all of us.

The chronic illness of a child requires a family’s total commitment every moment of every day in our modern society. It requires precious time to battle insurance companies, search for support and very often struggle with everyday tasks. But coping can also provide moments of profound dignity, grace, and joy. An Ordinary Day will provide a record of such moments, illuminating what it means to be a family, as well the meaning of humanity, regardless of health or lifespan.

An Ordinary Day has the full support of all the featured families and their social networks including Global Genes, NIH, NORD, MIT/Harvard’s Genome Project at the Broad Institute, and the 27 other specific organizations dedicated to each disorder (ranging from hundreds of thousands to millions of people). However, rare genetic diseases touch many more lives than just those that are directly affected by them: friends and extended family members.