Matt & Lauren Backe Family

THCC Ambassadors | Author | CHD Advocates

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Happily Everly After

With the help of mom, Lauren Backe, Jack & Everly wrote and illustrated this book in partnership with Books That Heal to tell the story from Everly's perspective of all the wonderful people in her life that have helped her live Happily Everly After through her journey with CHD.

 

 With a nod to all of the critically important medical teams, family and friends, the book aims to show other families going through a similar situation that sometimes strength comes in knowing you are not alone.

The Backe Family

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Our daughter, Everly, was born in 2017 with several critical, complex congenital heart defects. After her first open heart surgery at 3 days old, our family decided that we were going to do all we could to make life for children born with congenital heart defects- and other hospitalized children- and their families better, as well as give back and help all of the incredible medical professionals who have helped us over the past 4.5 years through 3 open heart surgeries and then some. We also excited to share our success stories because as Lauren was a teacher and literacy coach for many years, she truly believes success breeds success and it’s important to celebrate all the things that are going right! We are hopeful that sharing Everly’s story will help other families because “sometimes strength comes in knowing you aren’t alone.”

It wasn't that long ago, kids like Everly didn't survive. And now many do. Which is incredible, truly. But still 25% of kiddos like Everly don't see their first birthday. And 30% of kiddos like Everly don't live til age 18. We still have work to do. Awareness ---> Funding ---> Research ---> HOPE for a longer and better quality of life. We hope that research will lead to a better quality for Everly (for example GI issues related to her heart, etc) and kiddos like her.

Lauren currently serves on the Advocate Children's Hospital Family Advisory Council, is a board member for LJ's Healing Hearts and is an active contributor in planning and running LJ's events, and is a committee member for Children's Heart Foundation Red Tie Ball.

Together, Lauren, Matt, Jack (10), and Everly (4.5) work with Brave Gowns to get soft, comfortable, and fun hospital gowns on kids, collect pop tabs to benefit Ronald McDonald House Charities, and attend school kickoffs for the American Heart Association: Kids Heart Challenge. The Backe Family also enjoyed writing a book about Everly's CHD journey in 2020 with the foundation, Books that Heal. The Backe Family recently set up a blood drive with the American Red Cross.

The Backe Family has been published in the Journal for the Association of Vascular Access, The Mended Little Hearts Heartbeat Magazine, as well as many online journals.

Everly's CHD journey has been shared nationally and internationally. Everly's story has been shared in the Chicago Tribune, The Northwest Herald, People magazine, and more. Everly's story has been shared across many news outlets including Good Morning America, E!News, ABC, NBC, CBS, Newsnation, Fox, and radio stations such as The Bobby Bones show.

Lauren and Matt are very proud of how interested Jack and Everly are in helping other families with complex and/or hospitalized kiddos. “Your greatest contribution to the world may not be something you do, but someone you raise.”

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