Where care becomes community: Ozzy’s village at M Health Fairview Masonic Children’s Hospital
Ozzy Hentges was diagnosed with Down syndrome and leukemia before the age of two. Yet her parents Jessica and Bryce Hentges found a community of nurses, specialists, and families who made sure they never faced any of it alone.
Where Ozzy’s community began
Ozzy Hentges, 2, was diagnosed with Down Syndrome at birth. Her mom Jessica describes the day as ‘overwhelming’ in many ways. She and her husband Bryce were in love with their new daughter; they were also trying to grasp what the diagnosis meant for their family. After her delivery at M Health Fairview Southdale Hospital, there’s a moment Jessica describes that was beyond medical -- “She’d just been born and we were almost mourning the life we’d imagined for her with this diagnosis. Then there was this nurse practitioner who came into our room. Her daughter had Down syndrome too.”
After hearing their story, the nurse practitioner paid them a special visit. She sat with the family, showed them photos of her own daughter, shared stories, and reassured them, “your baby is beautiful. It might be scary right now, but she’s going to accomplish so much, and bring so much joy and love you didn’t know was possible. You will see. Plus the community is incredible.”
Jessica and Bryce say it was the moment their community truly began. “We realized that we weren’t doing this alone.”
Although the diagnosis was unexpected, the family quickly felt embraced by a growing community inside and outside the hospital. Their follow-up appointments at M Health Fairview’s Masonic Children’s Hospital’s Down syndrome clinic connected them with specialists, staff, and other families who understood Ozzy – and who understood them.
Then, when Ozzy was 15 months old, the family faced another life-changing diagnosis: leukemia.
Care that treats the whole family
Ozzy began showing signs that something wasn’t right—more fatigue, longer naps, minor pain during physical therapy.
One morning, Ozzy went limp in Jessica’s arms. She trusted her instincts and brought Ozzy into urgent care. Urgent care sent them to Masonic Children’s Hospital. Bloodwork came back and Jessica remembers looking at the results and saying, “I think Ozzy has cancer…I think she has leukemia.”
Doctors confirmed Ozzy had B-cell ALL, a form of leukemia. Treatment would require a two-year journey of inpatient stays and chemotherapy.
“We asked right away if this was the place we wanted to be,” Jessica said. “The team told us honestly: this is the best place she could be. And they weren’t wrong.”
Despite her young age and dual diagnosis, Ozzy has responded incredibly well to treatment. “They say kids with Down syndrome are more likely to get leukemia for some reason. But their bodies tend to respond better to treatment as well. She technically went into remission after one month,” Jessica said.
But what Jessica emphasizes most is being welcomed as a partner in her daughter’s care.
“I ask a million questions. I’m a very hands-on mom in the medical space,” she said. “And not once have providers made me feel like it’s too much. They make me feel like I’m doing right by Ozzy.”
It’s also helped the family build trust in their care team and their journey, which is foundational when facing something as scary as pediatric cancer.
Finding family inside the hospital
That kind of trust became the foundation for what followed. What kept Ozzy calm and kept her parents steady wasn’t just the medicine –it was the relationships forming around them.
Nurses, Resource Center staff, event planners, and other families became woven into their everyday life.
One nurse, Rylan, made a lasting impact. Toward the end of Jessica’s second pregnancy, exhausted and overwhelmed, she struggled to get Ozzy down for naps in the hospital crib. Rylan offered to help.
“Ozzy had never gone down for a nap for anyone else. But she fell asleep in Rylan’s arms without a peep.” For the first time in days, Jessica could sit on the couch and breathe.
Another memorable moment came when hematologist/oncologist Robin Williams, MD, surprised the family on Christmas Eve with good news: they were going home for Christmas. “They did everything in their power so that we were able to be released that next morning, a couple weeks earlier than planned, and spend Christmas Day at home,” Jessica said. “This also allowed me to be home for a week before I had our second daughter.
They bonded with families in nearby rooms and even on the hospital’s playground over their shared fears – and their inspiring victories. During a terrifying PICU stay where Ozzy was intubated for two weeks, they found strength talking with another family experiencing something similar.
“We talked about things our friends outside the hospital wouldn’t even know how to ask about,” she said. “Bloodwork numbers, weaning medication. We had people who could speak the same language.”
Looking toward brighter days
Ozzy is expected to finish treatment in September. Her parents are already dreaming about life beyond hospital walls.
“She loves to travel. She’s been on 12 flights before turning one. She loves to swim, to see new people, so we’re going on a trip. Somewhere warm, somewhere tropical.”
But more than anything, Jessica is excited for her daughter to simply feel good.
“She’s been on nausea meds twice a day. I don’t think she even remembers what it feels like to feel good. I’m excited for her to just be a kid.”
A community that keeps growing
Though treatment will someday end, the community surrounding Ozzy won’t.
Jessica continues to connect with families facing new Down syndrome or cancer diagnoses.
“I want people to know they’re not alone,” she said. “I’ve had moms reach out who feel like their world is falling apart. But after hearing Ozzy’s story they can see their baby has a bright future.”
