CRYSTAL LAKE, Ill. (WLS) -- It's an illness that could have taken the life of a 2-year-old girl from Crystal Lake, but she is a fighter.
Now she and her 7-year-old brother just published a book to raise awareness about congenital heart defects, and to show other kids and families suffering that they are not alone.
At 33-and-a-half weeks in utero, Lauren and Matt Backe found out their daughter Everly had a congenital heart defect.
"So, I was induced, and Everly was born, and she had her first open heart surgery at three days old, she had a second one at four months old, and a third one at 11 months," Lauren Backe said. "Right now, she's doing really great. She's happy, she's fun, she sassy. But we do have many more open heart surgeries in her future."
Everly's 7-year-old brother Jack is her champion, doing everything he can to raise awareness of congenital heart defect.
"Jack is so sweet to her, and in all honesty, Evy is quite sassy, so he is like a saint with her," Lauren said.
Jack designed a special hospital gown for children that focused on Everly's condition, and now the siblings have written a book together with a little help from their parents.
"It's called 'Happily Everly After,'" Lauren said. "The illustrations are lovely because Jack put so much of his heart into them, but I think that the photographs really show what our life is like."
Those photographs include pictures of Everly after her first heart surgeries, the family visiting her in the hospital, and her triumphant return home.
Inside the book, page after page and picture after picture tell the story of Jack and Everly. The money raised from book sales goes right to the hospital that treated her.
"The book is about Everly, about her heart," Jack said. "I writed (sic) it for other families not to feel alone."
He turned a page and pointed to a picture of Everly in the hospital.
"This picture was when I first ever met her," he said. How did he feel meeting his sister for the first time?
"Really, really, really, good," Jack said.
"He really watches out for her," said dad Matt Backe. "(He's) kind of like a knight in shining armor for her."
And now the knight is thinking of putting down his sword and picking up a stethoscope.
"I am thinking about being a heart doctor," Jack said.
"Every Christmas, the first thing he asks Santa for is for her heart to be fixed. So he really cares," Matt said. "He's accomplished more in seven years than I certainly have in 35, and probably will in my lifetime, and that's really awesome."
"We are just trying to live it up because we aren't guaranteed any time," Lauren said. "She's doing wonderful right now, but she still has a long road ahead of her. So we are just trying to do everything we possibly can as a family and just jam-pack in as much fun and excitement as we can, 'cause seeing her so happy makes Matt, and Jack and I see the world totally differently. Because the littlest things make her so thrilled."
To learn more about Jack and Everly's book and congenital heart defects, click here.
Crystal Lake siblings write, illustrate book to raise awareness of congenital heart defects
More TOP STORIES News