‘Feels like home’: Round Lake family has spent over 300 nights in Ronald McDonald Houses to be near daughter with rare genetic condition

Mia Polacek is a fighter.

Just days after her birth, Mia was diagnosed with Trisomy 18, also known as Edwards Syndrome, a genetic condition caused by an extra copy of chromosome 18. The condition carries a high mortality rate, with most fetuses not making it to full term. For those babies who are born, most do not make it past their first year because of cardiac and respiratory complications.

But Mia, now 7, has defied the odds.

“It is a miracle she made it through the pregnancy and to birth,” said Mia’s mom, Jeanna Polacek of Round Lake. “She has surpassed everything we have ever been told. There have been other kids and adults who have been through this, and there is more research and care plans available that are helping them live longer lives. She’s doing very well despite all of her challenges. We just take it day by day, but so far she is beating all the odds they gave us.”

Her condition meant a long stay at Advocate Christ Hospital in Oak Lawn, and the family wanted to be close to Mia without having to travel back and forth from Round Lake. That is when they learned about Ronald McDonald House.

“The first time we stayed at the Ronald McDonald House was after Mia’s birth at Oak Lawn,” Jeanna said. “It was a life-saving opportunity. We had just had a life-changing diagnosis. I was post-partum. It was so critical to our own mental health having a place where we could go eat and sleep.”

Now, Mia is cared for by a team at Ann & Robert H. Lurie Children’s Hospital of Chicago, which means multiple trips to the city. This past January, Mia had to have a tracheostomy to help with her breathing. Thanks to the local Ronald McDonald House, the family was able to stay close to Mia the entire time.

“The space feels like home to us,” Jeanna said. “We spend so much time there that it actually feels like an extension of our home to us.”

Jeanna said Mia has spent over 400 days in the hospital, so the family, which also includes her husband, Robert, and youngest daughter, Madison, 4, have stayed at the Ronald McDonald House for a full calendar year in terms of days.

“It is set up like a hotel, but it is more homey,” Jeanna said. “They have 80-plus rooms, a common area with a huge kitchen, and chefs on staff who serve lunch and dinner, and they have a breakfast. There are playrooms for the kids and sports-themed rooms. You can stay as long as your child is in active treatment.”

Jeanna said that Ronald McDonald House is such a vital resource for families, just to take a shower, grab a bite to eat or to sleep somewhere besides a hospital room. She said that houses are everywhere and people don’t realize how close they are.

In fact, there are houses located near most of the major hospitals in the Chicago area, including Advocate Children’s Hospital, Lurie, Loyola University Medical Center, Northwestern Medicine Central DuPage Hospital in Winfield, UChicago Medicine Comer Children’s Hospital and Northwestern Medicine Prentice Women’s Hospital, as well as Family Rooms inside Advocate Children’s Hospital, Park Ridge; Edward Hospital, Naperville; Lurie; and UChicago Medicine Comer Children’s Hospital.

There is also the Ronald McDonald House Care Mobile program, which provides medical care to children in underserved areas in the Chicago area.

“It is so important to get their name out there and what they do,” Jeanna said. “I always thought it was related to cancer treatment and you could only stay there if your child was being treated for cancer. People think their child has to be critical for them to use Ronald McDonald House, but that is not true. They try to help as many people as they can, so you can stay there as long as your child is in active treatment.”

Lisa Mitchell, Chief Programming Officer for Ronald McDonald House Chicagoland and Northwest Indiana, said that when the first Ronald McDonald House was built in 1977, it was originally for oncology families.

“It was what we were born of,” Mitchell said. “But as there were more breakthroughs medically, we were able to grow and expand our support to all diagnoses.”

In order to keep the houses up and running, community support is vital.

“Funding and donations are critical,” Jeanna said.

As are volunteers. Robert Polacek said corporations or organizations looking to give back to the community should look into giving their time to the Ronald McDonald Houses.

“We still talk about one of the greatest meals we ever had was at the house near the Oak Lawn hospital, when Mia wasn’t doing so well. It was a Thanksgiving meal donated by a family,” Robert said. “Downtown has professional chefs, but I would say that any corporation that is looking to give back to the community could come out and prepare a meal and have an interpersonal conversation with the families staying at the house. It allows parents the chance to take a breath of fresh air and escape the hospital. To have a sense of normalcy.

“Corporations and even families who want to give their time are such an important supporting cast, and they can bring positive awareness,” he said. “I promise you are going to get an uplift from it. I wish I had taken the opportunity to help out when I had a chance.”

Mitchell said that Ronald McDonald House was built on the foundational support of volunteers.

“Our volunteers do everything you would do in your own house, times 10,” she said. “We don’t have the staff bandwidth to do everything, so we rely on the generosity of the community.”

That includes making meals for families, stocking shelves, baking cookies or gardening. Individuals or groups can sign up for a one-time service or become a regular shift volunteer scheduled to come in twice a month to help out. Volunteers must be 13 or older to volunteer at the house. Families and groups can also help out from home by packing toiletry kits and snack packs, or collecting pop tabs and bringing them to an area house.

Donations of all amounts are also welcome, Mitchell said.

“Primarily, donations go to our buildings and support programs for the families,” Mitchell said. “We have social workers that offer families something a little bit different than the social workers at the hospital.”

There is also a program that caters to siblings of children with a chronic illness called Sibshops.

“Siblings are profoundly affected by the illness as well,” Mitchell said. “We want to include and give them their own special moment.”

She said kids 5 and older are divided into age groups and play different types of games that will get them talking about their feelings.

“They meet new friends and learn that others have similar experiences as them,” Mitchell said.

The programs are offered about once a month, depending on the Ronald McDonald House occupancy, and Mitchell said that sometimes they open the program to the public so kids facing the same situation can join.

While the Polaceks’ youngest daughter, Madison, is too young for the Sibshops programming, Jeanna said the space is still welcoming for the younger kids, too.

“For Madison, it is hard to be away from me and Mia because I am usually the one that stays with Mia. Madison actually loves Ronald McDonald House,” Jeanna said. “She’s grown up with it, so it is like a comfort for her.”

And that comfort and care is really what Ronald McDonald House is all about.

“The diagnosis of a childhood illness is so profound and real in tangible and emotional ways. What we are here to do is mitigate that,” Mitchell said. “It allows parents to stay close to their child and improve their chances. We know it to be true that support during and after has a long-term impact on the family. That is why we have so many long term volunteers stay, because they can see the impact they have on the families.”

For details about Edwards Syndrome, visit edwardssyndrome.org.

For information about the Sibshops, or how to donate or volunteer at Ronald McDonald House, visit ronaldmcdonaldhousechicago.org.