At the Minneapolis and St. Paul Children’s Hospitals, as well as the University of Minnesota Masonic Children’s Hospital, colorful Thirty-One tote bags with the word “HOPE” embroidered on the side are filled with shampoo bottles, body wash, eye drops, razors, soft Kleenex and other daily essentials. Additional items like playing cards, adult coloring books and colored pencils, and a brand-new cozy blanket, help many days—that can blur into weeks and months—at the hospital just a little more comfortable.
The totes are gifts from Fiona’s Hope, an organization founded in March of 2014 that supports families of children receiving care for an illness, an accident, or unexpected diagnosis and who are facing long-term hospital stays. The Vadnais Heights nonprofit is named after Stephanie and Joe Palewicz’s daughter, Fiona Grace, and is a labor of love that comes from a place of unbridled hope.
Joe and Stephanie were thrilled with the arrival of their newest family member, Fiona, on October 20, 2012. The Palewiczes, however, couldn’t imagine the challenges that lay ahead for the new family of three, and they didn’t expect that the Children’s Hospital in Minneapolis would be their home for the next nine months.
Fiona, who was born with Down syndrome, faced several health challenges in her first few hours of life. “She was born with a heart condition,” Stephanie Palewicz says. When Fiona was only 36 hours old, she developed necrotizing enterocolitis, a disease that causes infection in the intestines.
“Everything spiraled from there,” Palewicz says. As hospital staff treated Fiona with antibiotics, with tiny plastic lines in even tinier veins, over the next few days, they discovered “free air” in her belly, meaning there was a hole in her intestines. “By that time, she was incredibly sick.” Palewicz says. “At four days old she had her first emergency surgery.”
Anxious for their daughter, the couple spent many long weeks by her bedside, as her health remained precarious. As the long corridors, hushed waiting areas and sterile hospital rooms became their new normal, Palewicz sought ways to bring the comforts of home: a blanket for sleeping on an uncomfortable couch, books or magazines to read, and snacks for when they couldn’t leave the room. Her Thirty-One bag became indispensable for carrying the everyday essentials to and from home, a portable connection to the place they longed to be.
The idea for turning the totes into gifts evolved when Palewicz found out a friend was going through a similar situation. “At the time we created [the organization], Fiona had overcome a lot, and her story was one of hope,” says Palewicz, “that you can go through all this horrible stuff and come out on the other side; to keep pushing and keep the faith that things can be OK.” Palewicz began collecting supplies to put the Thirty-One totes together for other families enduring long hospital stays.
Finally, after nine long months of hospital living, a breakthrough came for the Palewiczes. A total of five gut surgeries and one mind-numbing and worry-inducing open-heart surgery later, they were told Fiona was stable enough to be released. She was discharged at the end of July 2013.
“She came home,” Palewicz says with a smile. “It was such a wonderful day. We had been waiting so long: 278 days. It was a learning curve for everybody, but Fiona just thrived at home. We laid her in her crib the first day, and she would just roll over and go to sleep. She was just so happy to be home.”
Though the following months were hard due to many requirements—for oxygen, feeding tubes and medications—the Palewiczes sought to live life as normally as possible. A huge milestone occurred before her first birthday, when Fiona was able to get off oxygen. “She was doing more, she was sitting up,” Palewicz says. “We signed her up for swimming lessons, we would go to the lake, take her places; we just did regular things and it was really fun.”
Palewicz lights up as she talks about her daughter. “She was just really happy, [she had] a super-silly personality, really spunky, but fiery,” Palewicz laughs. “She was so much fun to be around, she was such an awesome little kid through it all. We tried to soak up everything with her,” the Fiona’s Hope founder recalls. “I used to rock her to sleep at night, and I just always had this feeling . . . I just felt like I wasn’t going to have her very long, I couldn’t explain it.”
June 13, 2014, became a day the Palewiczes would forever remember as Fiona’s “angel date.” It was the day their daughter unexpectedly passed away after going through a scheduled heart surgery for pulmonary hypertension.
Palewicz gracefully shares with others on the Fiona’s Hope website what she has learned from her precious daughter.“Throughout her life, Fiona inspired many and spread a message of hope, perseverance and the belief in miracles,” Palewicz says. “By all odds, Fiona should not have lived past the first few days of life, but instead she fought and graced our lives for 19 amazing months.”
Ashley Rabemahefa knows the comfort and encouragement each Hope tote provides. Her daughter, Tsihala, who was also born with Down syndrome, was admitted to Children’s Hospital in Minneapolis when she was diagnosed with acute myeloid leukemia in September 2016.
“When some local moms had requested the tote for us, Stephanie, also a part of the Down syndrome community, reached out to me,” Rabemahefa says. “I felt a real sense of compassion, concern, and empathy from her, as if we had been friends the whole time.”
Palewicz receives referrals for families in need through the Fiona’s Hope website, and the organization has donated over 400 totes to date. “[The totes are] a little reminder that you are not alone in this world, that there are people out there who care about you, that are pulling for you and praying for you,” Palewicz says. “Their purpose is to send a message—that once you choose hope, anything is possible.”
Want to Help?
Anyone can refer families in need in hospitals in Minnesota or out of state by completing a form online. Individuals may also donate money or supplies for the totes, or sponsor a tote for a family by covering its cost with a suggested donation of $100.