AVM Warrior

Dana was just 10 years old when she began having seizures. Our parents were told she had a rare condition called an arteriovenous malformation, or AVM, and were referred to a neurologist. At the time, there was very little information available to our family about AVMs, and our parents were terrified they were going to lose their daughter.

Dana’s AVM was monitored for many years through MRIs and angiograms, and she took medication to manage her seizures. In 2008, she suffered a brain bleed and underwent major brain surgery, which included the placement of a shunt. Her recovery took years of physical and occupational therapy. Dana worked hard and recovered remarkably well, but the brain bleed and surgery left lasting effects that changed her life in ways that never completely went away.

During that time, doctors also discovered three aneurysms. Because of their location and the risks involved, they could not be safely treated and remained throughout the rest of Dana’s life.

Eighteen years later, in 2026, Dana suffered another major rupture and brain bleed. This time, the damage was too severe, and it ultimately took her life at the age of 53.

After everything Dana had already been through, she understood how serious her condition was and knew there were risks she would always live with. For years, she did the testing and monitoring that came with it. Eventually, Dana decided she didn’t want to spend the rest of her life waiting for another scan or worrying about what might happen next. She wanted to live.

That decision says a lot about Dana. She knew what she was facing, but she chose not to live in fear. Her faith in Jesus was an important part of that. She trusted Him with what she couldn’t control and kept living, loving, laughing, and embracing the life in front of her.

Dana’s diagnosis changed our family from the very beginning. For more than 40 years, our parents loved their daughter while carrying a worry that never completely went away.

Looking back now, we realize just how blessed we were to have 18 more years with Dana after her brain bleed and surgery in 2008. Those years gave us more birthdays, holidays, family gatherings, laughter, pictures, and ordinary moments together that mean more to us now than we ever could have imagined.

Our faith in Jesus carried us through the uncertainty then, and it is carrying us through our loss now. We may not understand why Dana’s story ended when it did, but we believe she is with Jesus now, completely healed and whole. Our hearts are broken, but our hope is not.

To anyone facing an AVM diagnosis, ask questions, seek answers, and advocate for the best care possible. But don’t let the fear of what could happen keep you from living the life you have today.

Dana’s life taught us that we don’t get to choose how much time we are given, but we can choose what we do with it. Make the memories. Take the pictures. Say “I love you.” Celebrate the birthdays and holidays, but don’t overlook the ordinary days in between. Those may someday become some of your greatest gifts.

And know that you are not alone. We hope Dana’s story helps another family find the information, support, and community that were so difficult for ours to find more than 40 years ago.