There is currently no cure for cystic fibrosis, and far too many people with CF lose their lives at a young age. I’m walking to help change that heartbreaking reality. This cause is deeply personal to me—my granddaughter, Berkeley, lives with this disease.

Cystic fibrosis is a genetic, life-shortening illness that primarily affects the lungs, pancreas, and other vital organs. It makes it hard to breathe, digest food, and fight off life-threatening infections, often leading to severe lung damage and respiratory failure.

Every person with CF walks a unique and challenging path. While medical progress has been made, there’s still a long way to go. We need a cure—so every person with CF can have the chance to live a long, healthy life.

Let me tell you about Berkeley.

She’s our third grandchild and our first granddaughter—one of six now. Her journey has been difficult from the start. At birth, she had the umbilical cord wrapped around her neck. Thankfully, doctors acted quickly to fix that. But then she still hadn’t had a bowel movement and wasn’t eating. She was in obvious pain. Concerned, her mom called the nurses, and an X-ray revealed a blockage in her intestines.

Because our local hospital didn’t have the necessary resources, she was transferred an hour away to the nearest children’s hospital. There, they ran several tests and eventually cleared a dangerous meconium plug. Still, no one suspected cystic fibrosis right away—there was no known family history, and neither Berkeley nor her older brother had been screened.

Berkeley spent nearly a month in the NICU, including Thanksgiving. We were all scared, heartbroken and confused.  After the plug was cleared, she was sent home, still waiting on test results. For three months, she had no medication. She was dangerously underweight and struggling to breathe.

When the CF diagnosis finally came in, she was started on enzyme therapy, and her mom began doing chest percussion therapy to help clear her lungs. Since then, Berkeley has faced numerous hospitalizations due to life-threatening infections. She has the Delta F508 CF mutation and has been on multiple medications: Kalydeco, Orkambi, Trikafta, and now the newest, Alyftrek. That doesn't include all of the other types of treatment, inhalers, other medicines, SmartVest and Vitamins. The new treatment requires liver monitoring—she’s even had to stop one due to liver damage.

Despite the challenges, we’re grateful for how far CF research and treatments have come. But access to care remains a serious concern. Families like ours depend on Medicaid and access to medications—some of which come from other countries. Cuts to funding, research, and Medicaid could mean life or death, not just for CF patients but for many others living with serious illnesses. Without Medicaid, my daughter could never afford Berkeley’s yearly medication and doctor visits—over $80,000 and $24,000 respectively.

Today, Berkeley is 16 years old. She’s strong, resilient, and on the brink of independence—soon she’ll be driving herself to her four-hour appointments, an hour away. (Her mom isn’t quite ready for that!)

We know times are tough, and everyone’s worried about finances. That’s why I ask first and foremost—please pray for these children and families. We believe God will provide. Secondly, we urge you to speak up: ask your leaders to protect access to research, medications, and critical health programs. And finally, if you’re able, any donation you make will help keep this bridge of hope standing.

Thank you for letting me share our story and God bless you! 

Will you help us end cystic fibrosis?

By donating to my fundraising goal, you’ll help advance the science and research needed to make a cure possible—for Berkeley and for everyone living with CF.