Book Project: I have written a children’s picture book that I hope will raise awareness about a rare skin disease called, Epidermolysis Bullosa, or EB. This incurable disease causes blisters all over the body. Children often live in constant pain and have much of their bodies covered in bandages to protect their skin from infections. Those who suffer from EB are called the butterfly children because their skin is as fragile as a butterfly’s wings. The book is called BUTTERFLY CHILD.
Book Purpose: I wanted to write something for the children who face this disease head-on every day. My little friend Ella, who has EB, inspired me to write a story from the child’s point of view, as if the EB child truly was a butterfly. My research for the book revealed amazing similarities between these children and actual butterfies. Both face great struggles each day and yet they persevere; they keep flying.
The story starts out playful, with the butterfly admiring other creatures for being big, loud, and powerful. Then the quiet butterfly describes life as a delicate, gentle creature who faces many obstacles. In the end, the story celebrates the tenacity of a butterfly. These colorful, winged beauties might be small and fragile, but they are strong.
Several beta readers have remarked the butterfly character could actually be any child suffering from an incurable disease. Somehow, these beautiful, fragile young people find a way to keep up the fight. I want this book to honor all of them, their bravery and their strength.
Book Details: BUTTERFLY CHILD will be 32 to 38 pages long (page count will vary depending on the thank you and information sections) in both soft and hardcover formats. An e-book could be a stretch goal, if we get that far.
The story of the butterfly will unfold through colorful images from wonderful artist, Sara Grier. She has already painted most of the illustrations in acrylic and watercolor. The end of the book will have an information section educating readers about EB and how they can help EB families.
Budget: Sara Grier has generously given me a discounted fee for her illustrations. I have already paid half, and this Kickstarter campaign will help me cover the rest. The other costs involve editing, formatting, publishing, and printing, including the first shipments of soft and hardcover copies. In addition, the funds will help with the costs of the Kickstarter rewards and fees, too.
I also should mention, while the Kickstarter funds are strictly for the purpose of publishing BUTTERFLY CHILD, once it's done, I will be donating a percentage of the earnings from each book to a national non-profit, called DEBRA of America. The agency is dedicated to research and to helping EB families.
Risks and challenges
This project will get done! The only risk might be with the schedule. I have set deadlines for the illustrations and formatting to be finished this fall. I have goals for submitting the first proofs. I’ve even cushioned those deadlines to allow for time needed to fix possible errors and resubmit. However, once the final version is set and submitted for printing, then we’re on the printer’s schedule and sometimes it takes much longer to print and ship than I hope.Learn about accountability on Kickstarter
- (26 days)