Empowering Siblings Coping with Congenital Heart Defect

We all know the power of sharing your personal story through illness. As a child life specialist, I work closely with kids to help them find their voice, document it in words, photos or illustrations. It’s therapeutic for the child, but also inspiring to others. I’m excited to share a new children’s book, created by two young siblings, Jack and Everly.


Guest Blogger, Lauren Backe, Mother and Advocate

You may remember Jack and his sister Everly from the Starlight Children’s Foundation gown contest last spring. Jack entered a contest with 6,000 other entries and thanks to the votes of many, he won! Everly got to wear Jack’s hospital gown for her 3rd open heart surgery last summer.

Jack and Everly are back again! They recently wrote and illustrated a book Happily Everly After. The book tells the story of medically fragile children from the perspective of the child with encouraging and empowering undertones. Jack and Everly have received lots of raving reviews about how much kids enjoyed reading it and how much they learned about congenital heart defects, CHD.

Jack and Everly, along with mom and dad, tell their CHD journey because they want other families to not feel alone and they also want to shine a light on CHD and spread awareness. They hope the book will explain things in a kid-friendly way, like feeding tubes.

The book Happily Everly After was made with the 503(c) Books that Heal. They help pediatric patients battling chronic illnesses write and illustrate their very own children’s books to become published authors and illustrators! Because Everly is just 2 years old, her big brother Jack helped tell her story living with a congenital heart defect. CHD affects the whole family in big ways. Wait until you hear how Jack wrote the story from Everly’s perspective! Everly and Jack worked together to create the illustrations, with the help of their Mom. They used watercolors and crayons. You’ll find many of Everly’s hand and footprints throughout the book, along with photographs of Everly’s journey.

All proceeds from the book will benefit Advocate Children’s Hospital: Advocate Heart Institute.

It is available for purchase on Amazon and Books That Heal.

Jack and Everly will be having a book signing in the Northwest suburbs of Chicago. Be sure to follow on Facebook to learn about their events.

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