Charity helps family while baby in long-term care for rare heart disease

In the first year of Everly Backe’s life, she had three open-heart surgeries, the first one at only 3 days old, followed by another at four months and her most recent at 11 months.

The lives of her parents, Lauren and Matt Backe, and older brother, Jack, then 5, were altered as the constant care and hospitalization of Everly, born with a rare heart defect, took center stage.

The Crystal Lake family found themselves driving sometimes more than two hours one way to Advocate Christ Medical Center in Oak Lawn, where they found the best heart surgeon they could to care for their new daughter.

The drives were tiresome, and Lauren found herself making the long trek on her own with her baby girl as Matt tried to lead a normal life back home with Jack.

The surgeries required long hospital stays, but the events were softened some, Lauren Backe said, because they were provided with a room at the Ronald McDonald House just across the street.

“Staying at the Ronald McDonald House means that when Everly is doing bad I can be there in two minutes, not two hours,” she said.

The charity operates houses throughout Northwest Indiana and Illinois. The idea is to keep families together, close to their hospitalized child while saving them from paying the high costs of long-term hotel stays during critical medical situations.

Knowing Lauren Backe’s baby was going to be born with a heart defect at 33 weeks of pregnancy, her placement at the house was arranged before her baby was born.

Lauren Backe said there were some nights she walked out of the hospital at 3 a.m., crossed the street and went to her private room at the house. There always was a meal with her name on it inside the refrigerator, made by volunteers.

And when possible, during the longer stays, her husband and Jack were able to come and stay with her.

Families who stay at the house are not required to pay but, if possible, a $10 daily fee is suggested.

The family has worked to give back, including making meals and handing out cards on Mother’s Day to the families staying at the house.

Jack, now 7, gave back in his own way by collecting 1 million pop tabs, which in turn earned the charity about $500 from United Scrap Metal. When people learned what he was doing, his mother said, baggies of tabs would show up on her front porch.

“I like to collect pop tabs because it turns into money for the Ronald McDonald House that lets people stay there,” Jack said. “I like to stay there because it means I get to see my mom and visit my sister when she has surgeries. I collect pop tabs so other families can stay close like I do.”

Although there were times in her first year and a half of life when Everly was so sheltered and fragile she had to be kept from crying, today she is off all medicines, has finally met extended family members, visited the zoo and even attends a park district class for toddlers.

But this is temporary, because as Everly grows, she will need more surgeries, her mother said.

At least she knows she can stay close to her daughter when that day comes.

“Ronald McDonald House gives families a little sense of normalcy during those weeks,” she said. “For a few minutes, you could play Mario Kart and feel like a normal family.”