For Courtney Zurlnick, a mother of three and founder of the Ella Rose Foundation, her journey has been defined by uncertainty, resilience, and ultimately, purpose.
“I am a stay-at-home mom now,” Courtney shared. “I taught for 14 years, but because Ella was sick, I took time off. Now I’m home taking care of my kids.”
Her daughter Ella, now 11, has profound disabilities. But for years, the family didn’t know why.
A long road to answers
Ella’s challenges began at birth. “She had a brain bleed… and was in the NICU,” Courtney recalled. “The night before we were supposed to go home, she stopped breathing.”
Although doctors initially believed the issue had resolved, Courtney soon sensed something was different. “Her muscles weren’t strong… she was very floppy,” she said. Despite early interventions and countless specialist visits, answers remained elusive.
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“It wasn’t until Ella was eight and a half that we got her Rett syndrome diagnosis,” Courtney said.
The moment brought an unexpected sense of relief.
“Honestly, it was a relief… because up until that point, we didn’t know what was wrong,” she explained. “When you’re part of the undiagnosed community, you don’t really have anybody to lean on.”
With a diagnosis, everything changed. “It was like the skies opened up… we could finally manage things better because we had a direction.”
Daily challenges, quiet strength
Ella is nonverbal and non-ambulatory. “She’s not talking, she’s not walking,” Courtney said. “But she communicates so well… I truly think she understands everything.”
Still, daily life comes with practical and emotional challenges.
“Getting the resources we need is one of the hardest parts,” she said. “We need things like a modified van… and that’s not something most families can afford.”
There are also social challenges. “People stare… sometimes you feel that judgment,” she shared. “But I’ve reached a point where it doesn’t really bother me anymore. She is who she is.”
Turning struggle into support
Those struggles led Courtney and her husband to create the Ella Rose Foundation three years ago.
“For the longest time, we were trying to get medical equipment… things insurance just didn’t pay for,” she said. “We realized there weren’t enough resources to help families like ours. So we decided—we would be that source.”
Today, the foundation helps families access essential items—from adaptive strollers and high chairs to life-sustaining equipment.
“We’ve provided things like generators for children on oxygen,” she said. “It’s been really rewarding, because there’s just not a lot of help out there.”
Why financial support matters
Courtney emphasized that financial strain is one of the biggest burdens families face.
“You would think insurance would cover these things—but it doesn’t,” she said. “Medications are expensive, co-pays are high… and many families have other children too.”
Her goal is simple: ease that burden.
“If we can help, maybe they can take a trip… maybe they can buy Christmas presents,” she said. “That’s really the goal.”
A story that says it all
One story that stays with her is a young girl named Braelyn, who also has Rett syndrome.
“She was being put in a chair in daycare and not really included,” Courtney said. The foundation provided a specialized supportive chair.
“Her mom called me crying… she said, ‘She can participate now. She can sit and play with her siblings.’”
For Courtney, moments like that are everything.
“She can be part of the world now,” she said.
Building community and hope
Beyond financial support, the foundation is creating a growing community. From fundraisers to support groups, families are finding connections.
“The amount of people who show up to support us… it’s just beautiful,” Courtney said. “Families we’ve helped come back, stay in touch—it means everything.”
Her message to other caregivers is simple but powerful:
“Don’t lose hope. There are people out there. Call someone. There’s always someone who can help.”
She also encourages families not to isolate themselves.
“It’s scary, but it’s such a welcoming place,” she said of support groups. “There’s no judgment. We just talk and support each other.”
Looking forward
As the Ella Rose Foundation continues to grow, Courtney hopes more families will step forward and connect.
“My hope is that more people come into this community so they don’t feel so isolated,” she said.
Through her journey, one truth stands out: even in the most difficult circumstances, connection and compassion can create lasting change.
“We’re figuring it out as we go,” she said—and through that effort, helping others do the same.