Crystal Lake family hosts blood drive in honor of daughter with rare heart disease

Six-year-old Everly Backe from Crystal Lake was born with a rare congenital heart disease that led to three open-heart surgeries, the first when she was only 3 days old. She receives about 19 medication treatments each day and is always getting blood drawn, mom Lauren Backe said.

The Backe family hosts a blood drive every year to honor Everly and give back for all the blood donations she has received over the years. This Sunday, the family is hosting a blood drive with the American Red Cross from 9 a.m. to 2 p.m. at the Cary Park District Community Center, located at 255 Briargate Road, Cary.

“I think it’s important for her to see the whole process and see that it’s not just her getting poked all the time,” Lauren Backe said.

This is the third year the Backe family is hosting the drive with the Cary Park District. The park district donates the space to the Backe family every year.

“The Park District would encourage anyone interested in giving blood to attend and show support for Everly, her family and all those who are fighting the same fight as Everly,” Cary Park District Executive Director Dan Jones said in an email.

Lauren Backe doesn’t have any set goals for Sunday’s blood drive, but simply wants to raise awareness of the importance of donating blood. Last year, the event drew over 70 donors. With each donation saving up to three lives, “we were looking at hundreds of lives saved in a few hours,” Lauren Backe said.

“So getting people to see that it’s not quite as scary or time-consuming or hard as you think it’s going to be,” she said.

Throughout her life, Everly has received blood transfusions, tissue donations and aid from nonprofit organizations. It’s important to give back in any ways they can for all the help they have received, Lauren Backe said.

And the Backe family is no stranger to giving back, from book and toy drives and raising funds for nonprofits to collecting over 3 million pop tabs for Ronald McDonald House. Everly and her 12-year-old brother Jack co-authored the children’s book “Happily Everly After,” and all proceeds go to the Advocate Children’s Hospital Heart Institute through the Books That Heal foundation.

“Not everybody can donate financially, so I like to try to come up with things that they don’t have to,” Lauren Backe said.

Treated by Advocate Children’s Hospital in Oak Lawn and a Mayo Clinic hospital in Minnesota, Everly’s unique heart defects were caught in utero. They require her to have an artificial heart valve, which needs to be replaced as Everly’s heart grows or as the valve goes bad. The family expects Everly to get another open-heart surgery within the next year, Lauren Backe said.

Everly has had “a rough couple of years” due to her heart complications affecting her other organs, Lauren Backe said. Despite the challenges, her quality of life has improved as she started to attend kindergarten and do things a healthy child gets to do, she said.

The family plans to have Everly Backe as the ambassador for the Make-A-Wish ball in Chicago next month and participate in this year’s Children’s Heart Foundation Chicago Congenital Heart Walk in June and the Make-A-Wish walk in October.

Lauren Backe hopes the drive will inspire others to keep donating blood, especially with the shortage the Red Cross is currently experiencing.

“If you can’t donate that day, there’s so many opportunities everyday,” she said. “If you go on the Red Cross [website], there’s probably somewhere not that far from you to donate.”