Family from UH Rainbow Babies & Children’s Hospital Heads to Washington to Advocate for Children’s Healthcare

CLEVELAND — Mia Wilson, 14, and her family from New Franklin, Ohio, are traveling to Washington, D.C., to share their inspiring story with lawmakers during the Children’s Hospital Association’s (CHA) 20th Annual Family Advocacy Day (FAD). Mia, a patient at University Hospitals Rainbow Babies & Children’s Hospital, relies on life-sustaining care and will highlight how federal policies directly affect children and families nationwide.

During their visit, the Wilson family will meet with members of Congress who serve and represent Northeast Ohio to advocate for critical priorities, including:

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

“I’m grateful to remind our leaders in Washington that every decision they make impacts children’s lives,” said Wendy Wilson, Mia’s mother. “Mia takes up to 40 medications daily, uses oxygen, relies on a wheelchair for long distances, and is cared for by a dedicated team at Rainbow who treat her like family. We are proud to raise our voices at Family Advocacy Day to protect the care that has helped Mia thrive.”

At UH Rainbow Babies & Children’s Hospital, Mia is treated as a whole person — not just a diagnosis. Care teams coordinate around her anxiety and create moments of comfort during long hospital stays, like decorating her room for the holidays.

Diagnosed in utero with Ebstein’s Anomaly and given just a 10% chance of survival, Mia spent her first 11 months in the hospital, enduring multiple cardiac arrests, open-heart surgeries, infections, and heart catheterizations. Her resilience has been nothing short of extraordinary.

Because Mia faces frequent surgeries and “pokes” (as she calls them), she was eager to support her longtime cardiologist Dr. Martin Bocks’ development of a new bioresorbable device designed to reduce painful procedures for children like her. Through lemonade stands, car washes, bake sales, and even selling seashells, Mia and her family have raised over $55,000 to fund this groundbreaking research.

“At University Hospitals Rainbow Babies & Children’s Hospital, we see every child as a unique individual with a story that deserves to be heard,” said Marissa Kiefer, MHSA, President of UH Rainbow Babies & Children’s and MacDonald Women’s hospitals. “Mia’s courage and determination inspire us all, and her family’s advocacy reminds us why it’s critical to protect and invest in pediatric healthcare.”

In these uncertain times for our healthcare system, Mia and her family courageously share their story to push for meaningful change. Now more than ever, Congress must protect and strengthen children’s healthcare.

“When it comes to the health of America’s children, families deserve policies that put their needs first,” said Matt Cook, CEO of the Children’s Hospital Association. “We’re proud of advocates like Mia, who represent the strength and resilience of families across this great country—and who remind leaders in Washington what matters to families and communities.”

Family Advocacy Day brings together patients and parents from 60 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.