Esther Viola Frey was always a fighter.
When Monica Frey’s water broke at 28 weeks, she was told that her baby would most likely be delivered within 48 hours. Esther ended up lasting six weeks in utero. At 34 weeks, Monica was told the baby would be safer outside of the womb, so she was induced.
“Esther was born on March 20, 2018, at 34 weeks and spent six weeks in the neonatal intensive care unit. Her blood tests came back positive for a rare genetic disorder called trichothiodystrophy, which affects many parts of the body,” shared Monica.
Esther spent a lot of time in the hospital due to her condition.
“She had a way about her that made people always want to engage with her. Even in the hospital, people would want to play peek-a-boo with her and give her gifts. She was so friendly and happy and had such a connection with people.”
Esther was Monica and Tim’s second child. They also have an older son, Billy.
“The long hospital stays were really hard. Tim would stay with Esther during the day while I was at home with Billy. At night, we’d switch so Esther would always have one of us with her,” said Monica. “Not all the kids always had a strong support system like we did, which was difficult to witness. The clinical staff tries as hard as they can to spend time with the kids, but it’s just so hard when there are so many kids that need attention.”
Esther passed away due to complications from trichothiodystrophy on June 13, 2020. She was 2 years old.
“We wanted to do something to honor her spirit. She wasn’t very verbal and was only 13 lbs., but her personality was huge. She really loved being fancy and wearing dresses and play makeup. She liked Nirvana’s music. The kids in the hospital were her community, and we knew we wanted to support them and their families.”
Monica and Tim started a nonprofit, Esther’s Friends, to benefit pediatric patients and families across Chicagoland, including at Advocate Children’s Hospital.
“Esther was small and mighty, so we strive to be the same. We work with each hospital and organization to fill in the gaps to provide what each hospital needs the most.”
Esther’s Friends provides monetary support as well as donated gifts like comfort kits, which are filled with items for long-term stay patients to let them know they are loved. Esther’s Friends also funded a therapy dog through Rainbow Dogs, an animal-assisted therapy organization that provides visits for patients and staff. Even Esther’s big brother, Billy, is doing his part to honor his little sister.
His elementary school is holding a toy drive this holiday season.
Small gestures make a big impact
Gifts from Esther’s Friends are bringing smiles and comfort to patients and families at Advocate Children’s Hospital. One mother became tearful after receiving a comfort kit. She shared, "It really is the little things that make a big difference."
A young patient looked into their bag, smiled and yelled "TOYS!" The mother stated this was the first time she’d seen the patient smile since being in the hospital.
After exploring the items in the bag, another child exclaimed, “Wait, I get to keep this stuff? This is the best hospital ever!"
The care teams are also grateful. A certified child life specialist stated, “These bags have been wonderful to provide to families. I’ve also had the opportunity to use some of the items included to engage patients in activities to help normalize the hospital environment.
The mission behind these bags is so important, and families are always beyond appreciative. The comfort items truly allow families to feel supported and the toys allow kids can do what they need most – play! Thank you so much for all you do.”
How you can help
Advocate Children’s Hospital is part of Advocate Aurora Health, a not-for-profit organization that relies on charitable support for many of its programs and services. Please consider making a gift today.