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After girl's open heart surgeries, Crystal Lake family gives back to Ronald McDonald House

Lauren Backe can vividly remember the overwhelming fear and uncertainty of learning that her unborn baby's heart hadn't formed properly.

She felt helpless at the thought of her daughter undergoing recurrent surgeries. Then came a sense of loneliness as she realized they'd be spending weeks at a time in a hospital 65 miles from their Crystal Lake home.

That's why, two years since the diagnosis, Backe and her family are raising money, cooking meals and doing whatever they can to support others who are in the same situation by giving back to Ronald McDonald House, which provides a place for families to call home - with private rooms and home-cooked meals - so they can stay close by their hospitalized child at little to no cost.

“We try while we can to be able to go back and do the things we can to make a difference,” Backe said, “because I know how important and how helpful it was for us.”

Backe was a little more than 33 weeks pregnant when she and her husband, Matt, learned of their baby's congenital heart disease. They found an experienced pediatric cardiologist at Advocate Children's Hospital in Oak Lawn to perform what they thought would be one surgery.

But when Everly was born and doctors realized the severity of her case, the Backes were told their daughter would need three open heart surgeries before she turned 1 - plus another every few years for the rest of her life.

Feeling scared and alone, Backe spent the majority of her days at Everly's bedside, leaving the hospital only to sleep and freshen up at the Ronald McDonald House across the street.

Meanwhile, Backe's husband and their son, Jack, would visit on weekends while trying to maintain some sense of normalcy at home. But even after Everly was released from the hospital, she remained hooked up to machines and unable to leave the house for months.

It was difficult to see the light at the end of the tunnel, Backe said, and nearly impossible to imagine Everly as she is now - a smart, energetic, seemingly normal 2-year-old, with no machines or breathing tubes in sight.

“It was hard on all of us,” she said, but they chose to adopt a positive mindset: “This happened to us, and we're going to make the best of it, and we're going to try to make a difference for other families.”

  Born with a congenital heart defect, 2-year-old Everly Backe of Crystal Lake has been in and out of the hospital since she was born, and her family, including brother Jack and mom Lauren, continue to receive support from the Ronald McDonald House Charities. Rick West/rwest@dailyherald.com

The Backes don't need a room at the Ronald McDonald House right now, but they still return occasionally to bring meals to the families staying there. This summer, Everly and her brother opened a lemonade stand and used the profits to buy a brick as part of a Ronald McDonald House fundraiser.

Jack is especially proud of his recent efforts to collect pop tabs, which are then recycled and turned into a donation for the charity. He recently turned in his first million pop tabs - equating to about 790 pounds and $500 - and is one-third of the way to his second million.

The Ronald McDonald House asks families to pay a $10 contribution per night, though the fee isn't required. Money from the pop tab program goes toward making up the difference in operating expenses, according to the website.

“With the pop tabs, you don't have to do anything extra,” Backe said. “People who maybe can't (donate money) can still feel like they're making a big difference.”

Jack also decorated a hospital gown for sick kids and wrote a children's book to raise money for the hospital that treated his sister.

Backe knows it's only a matter of time before Everly will need another surgery and her family will return to the Ronald McDonald House. That's why her family is focusing on simple and effective ways to give back to a cause that supports them so significantly, she said.

“Ronald McDonald House allows us to feel like we're together as a family even when we're 65 miles (from home),” Backe said. “Being close when your child is undergoing huge, very complex heart surgeries is honestly priceless.”

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