Family from UH Rainbow Babies & Children's Heads to Washington to Advocate for Pediatric Health Care

CLEVELAND, Ohio – Carlina Szabo, 11, of Chagrin Falls, Ohio, and her family are traveling to Washington, D.C., to share their story with lawmakers during the Children's Hospital Association's (CHA) 21st Annual Family Advocacy Day (FAD).

What started as a suspected minor fracture and a case of poison ivy quickly became a medical emergency. Thanks to providers who trusted their instincts and acted swiftly, Carlina was diagnosed at UH Rainbow Babies & Children's Hospital with IgA vasculitis with nephritis (IgAVN), a rare and potentially life-threatening autoimmune condition.

As her illness progressed, Carlina's care escalated rapidly. Initial steroid treatment provided brief relief, but her symptoms soon worsened, requiring multiple rounds of high-dose IV steroid therapy. When her kidneys became involved, she underwent a kidney biopsy followed by three rounds of chemotherapy to suppress her immune system and prevent further damage.

Each step was more serious than the last – yet every decision was made with urgency, precision, and a clear plan, ensuring Carlina received exactly the level of care she needed at every stage. Carlina’s mom Danielle Szabo remembers one of her doctors saying treating a rare illness is more of an art than a science – and this statement rung true for Carlina’s case.

"Throughout it all, Carlina's care team never lost sight of the child behind the diagnosis," said Carlina’s mother, Danielle Szabo. "They played Uno with her, made bracelets, brought in therapy dogs, created slime, and even braided her hair before her biopsy. We are so fortunate to have UH Rainbow Babies & Children's Hospital in our backyard."

Today, Carlina is back to being a fifth grader – enjoying school, softball, playing outside, searching for frogs, and spending time with friends and family.

During their visit, the Szabo family will meet with members of their congressional delegation to advocate for critical priorities, including:

• Protecting and strengthening Medicaid support for children
• Expanding and supporting the pediatric health care workforce
• Addressing the growing youth mental health crisis

"Carlina's story is a powerful reminder that treating a child’s illness is about so much more than medicine. It is about making sure a little girl still feels like herself in the middle of a medical crisis,” said Marissa Kiefer, MHSA, President of UH Rainbow Babies & Children's and MacDonald Women's Hospital. “That is the standard of care every child deserves, and why it is critical to protect and invest in pediatric health care.”

“Family Advocacy Day is all about patients and their families pushing for policies that put them first,” said Dr. Paul R. Haut, President of Children’s Hospital Association. “Children’s health and well-being should be at the center of every policy discussion happening in Washington, because when we prioritize healthy kids, we build a healthy future for us all. We’re proud of advocates like Carlina, who represent the strength and resilience of families across the country and who remind leaders in Washington what matters to families and communities.”

Family Advocacy Day brings together patients and parents from more than 50 children’s hospitals across the nation, urging lawmakers to protect children’s care, support the doctors and nurses who serve them, and uphold the American value that every child deserves a healthy future.