An Ordinary Day - Kids with Rare Genetic Conditions

Rare genetic diseases are actually fairly common – one in 10 Americans is affected, while 95% do not have an FDA approved drug treatment.

“An Ordinary Day” displays photographs set against intimate conversations, presenting the stories of 27 courageous families living with children with rare genetic conditions. Readers will fall in love with each child while celebrating 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 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 every day moments captured in “An Ordinary Day” hope to inspire awareness and empathy, while highlighting the commonalities between families with rare genetic conditions, and more deeply between us all.

Note: My brother died of a rare disease called Tay Sachs and inspired the project. Most of the families documented feel isolated and alone. Please help raise awareness.