A breath that cost $35,000: Mother fights rare disease

For Bethany Duckworth, being an active mom wasn’t just a dream, it was her plan.

"It's depressing," Duckworth said. "It's sad."

last year, everything changed. Her world was turned upside down after being diagnosed with a rare and life-altering disease.

In June of last year, Duckworth visited the emergency room with shortness of breath and chest pain. Over the next several months, she endured numerous tests and procedures, but still, no answers.

Then in February 2025, she underwent an external e-consultation with Dr. Picard at the Mayo Clinic in Rochester, Minnesota. After a thorough review of her records, the doctors finally gave her a diagnosis: Fibrosing Mediastinitis, a rare and aggressive condition that causes excessive scar tissue to form in the chest, restricting lung function and blood flow.

“Basically, I have a mass in my chest that's growing, and it's encasing everything that makes your body work," Duckworth said.

To reduce the inflammation and restore her breathing, doctors recommended a Rituximab infusion treatment. The plan included placing three stents in her arteries and blood vessels to allow blood to flow freely again and help her lungs fully inflate.

But, there was one major obstacle: the medication alone costs $36,000 for two infusions, and Bethany still doesn’t know if more will be needed.

“There's no guarantee that's all I will need," Duckworth said.

Adding to the emotional and financial burden, her insurance company denied authorization for the treatment, claiming it was “medically unnecessary.”

In need of help, Bethany applied for a grant for financing from the Rituximab manufacturer. But she believes the couple’s combined income from the previous year will disqualify them for assistance.

Now, Bethany is turning to her community, launching a GoFundMe campaign in hopes of covering the out-of-pocket costs without going into financial ruin.

“It makes me feel like the health system has failed me and my insurance has failed me," Duckworth said. "I pay $700 a month for my insurance, and they're not covering anything."

Despite the physical pain and emotional stress Bethany finds her strength in her family, leaning on her husband and their two-year-old son, Connor, to keep going.

Because for Bethany, even when the system fails, love never does.

"My husband, he's been wonderful. But I have a two year old who is very rambunctious, so it's really hard to keep up with him. My husband has had to basically do everything," Duckworth said.

To donate to Bethany's Gofundme, click the link here.