It is not often that a 2-year-old gets to write a book about their life experience, but thanks to her parents, Everly Backe did just that.
Written and illustrated by siblings Jack, 7, and Everly Backe, 2, “Happily Everly After” portrays the kids’ story from their own perspective about what it is like to lead a life that revolves around Everly’s condition.
Everly was born with a congenital heart defect (CHD) on Aug. 4, 2017. According to parents Matt and Lauren Backe, they found out about Everly’s disease seven months before her birth.
“This was a big change for us. Having a baby that’s hospitalized and not allowed to see anybody and not even allowed to cry changes your whole life,” Lauren said. “It has given us a totally different perspective and also a desire to raise awareness to other kids.”
Everly has already gone through three open-heart surgeries, the first of which when she was only 3 days old.
The Backes connected with Books That Heal, a non-profit organization that publishes books for patients battling chronic illnesses, to help empower families by telling their story. Matt said that all the proceeds from this book go directly to an organization or charity of their choice, the Advocate Children’s Hospital Foundation.
“We’ve got the opportunity to tell our story from the kids perspective about their journey,” Matt said.
According to Lauren, the journey for her son, Jack, was difficult in Everly’s first year of life since his younger sister was not in a position to receive visits or go anywhere out of the hospital; however, everything has now become more common for him.
“He wants to make a difference for other kids because he sees what is like to be in the hospital,” Lauren said. “Jack is very compassionate and empathetic even though he has seen a lot of really bad stuff.”
Lauren said in order to put the book together, Jack shared all the ideas he wanted to include and he also made the artwork, using Everly’s hands and footprints, too.
Nancy Loessl, Lauren’s mother, said that the goal of this book is to bring attention and awareness to CHD in order to get more funding and research for future cases. She also said that the book is a great opportunity to send a message to other people who go through similar situations.
“We want to let other parents know and feel that they are not alone,” Loessl said. “There’s another family out there who’s gone through the same things they did.”
More than 60 people attended the book release party on Sept. 21 at the Daily Events in Algonquin, Illinois. The family hopes to continue raising funds through their story.
“My hope is that these images spread awareness,” Lauren said. “Awareness leads to funding, funding leads to research and research leads to hope — [hope] that less babies will be born each year with CHD.”