The Yagiela Family: Turning Love Into Advocacy for Biliary Atresia

BA patient and family stories inspire hope and raise awareness. Check back each month for new features—celebrating survivors, honoring thrivers, and remembering those gone too soon.

When Lauren Yagiela was born on February 23, 2016, she seemed like any other healthy newborn—7 pounds 8 ounces, delivered without complications, and ready to go home with her family the next day. But just a month later, her pediatrician noticed something unusual about her complexion. A few tests later, Lauren was diagnosed with biliary atresia (BA), a rare liver condition that affects infants and can be life-threatening without early intervention.

For Marsha Yagiela, a registered nurse with 20 years of experience, and her husband Eric, a devoted stay-at-home dad, Lauren’s diagnosis was the start of a journey that would shape their family’s mission: raising awareness, connecting with other families, and supporting the BA community. Alongside her older brother Connor, now 11, Lauren has grown up surrounded by love, advocacy, and hope.

Discovering Community and Connection

Marsha first learned about BARE (Biliary Atresia Research & Education) through Facebook. Drawn to their mission to advance research and provide education for families affected by BA, Marsha began attending their conferences as soon as they started. “We wanted to keep updated on what is happening in the field and connected with other families,” she shares. “We want Lauren to know there are others like her, and raising funds helps us stay connected and support BARE in furthering their goals.”

Through BARE, the Yagielas found not only resources and research updates but a vibrant, caring community. Meeting other families navigating similar challenges reinforced their desire to give back and advocate for those affected by rare diseases.

From Idea to Action: The Community Carnival

Inspired to do more than just walk in fundraising events, the Yagielas envisioned a community carnival—an event that would combine fun, awareness, and support for BA. Marsha recalls, “We came up with the idea as a family as a way to have fun and raise awareness. I approached our local church to use their facility, and they approved right away.”

Planning the carnival was a full family affair. The Yagielas brainstormed games, food, advertisements, and volunteer coordination. They raised funds for supplies through a pop can drive, rallied volunteers, and set up the event over two days. The community’s response was heartwarming: around 20 volunteers, 60 kids, and a large group of adults joined the first-year event, showing up to support Lauren and the BA cause.

“It was amazing to see so many people wanting to help,” Marsha says. “Even high school students got involved—they truly want to make a difference.”

Inspiring Advocacy and Awareness

For Marsha and her family, raising awareness for rare diseases like biliary atresia is deeply personal. “It’s about helping other parents who are going through this,” she explains. “To make navigating easier for future families and provide a support system so no one feels alone.”

She encourages others to take action, even if it feels like one person can’t make a difference. “It has to start with someone,” she says. “If you don’t do it, who will?”

Hosting the carnival strengthened Marsha’s perspective on advocacy and community involvement. She saw firsthand how much a community can achieve when it comes together for a cause. Local organizations, including the fire department, participated, giving tours and engaging with children while showing immense support for Lauren and her peers.

Looking Toward the Future

The Yagielas’ hope for the future of BA research is both practical and profound:

“We want to continue making advancements in diagnosis and eventually find a cure. We also want to make sure families know what resources are out there.”

To families affected by BA and those eager to help, Marsha offers this message:

“You are not alone. Reach out to me or BARE to see how you can help. We would love to have you in our community.”

A Family That Leads With Love

The Yagielas’ journey reminds us that advocacy can start with a single family, a single idea, or even a single child. Through love, dedication, and community engagement, Marsha, Eric, Connor, and Lauren are not only raising awareness for biliary atresia—they are building a lasting legacy of hope, support, and positive change.