Brian Holley

Brian Holley
I am riding 100 mi to fight kids' cancer and save little lives. Tell me your story and join the cause!
I've Ridden 0.0 mi ? My goal is 100 mi
My Rankings
  • National: N/A
  • State: N/A in WV
I've raised $0 My goal is $1,500 Donate Now

My Story

25 Jul 2025

March 30th, 2025 — the day everything flipped upside down. That morning, my wife Anna finally put her foot down and dragged me to the ER. I figured I’d get some IV fluids, antibiotics, maybe a lecture, and head home with a “yep, it’s probably Lyme meningitis” diagnosis. (Self-diagnosed, of course… 🙄) But what actually happened? I barely remember. I had been fading in and out for weeks. The headaches were unbearable. I had started blacking out. By the time I got to the hospital, I was days — maybe hours — away from slipping into a coma. A CT scan changed everything: Three brain tumors. Cerebral hemangioblastomas. They were blocking the flow of cerebrospinal fluid (CSF), triggering hydrocephalus — a dangerous pressure buildup in my brain that caused the worst pain I’ve ever felt. I already had an MRI scheduled for April 19th. The neurosurgeon told us if we’d waited, I probably would’ve stopped breathing. That’s how close we were. While I was being treated, Anna became a one-woman research team. She called specialists, tracked down resources, and tried to make sense of this rare diagnosis. Even the American Brain Tumor Association had little info specific to my case. Here’s the reality: A single cerebral hemangioblastoma is rare — only 1–2% of all brain tumors. Three? Almost unheard of unless you have a genetic condition called Von Hippel–Lindau (VHL) disease, which can be inherited. That’s where my son comes in. This story isn’t just about me. It’s about him — and anyone else who might be walking around with a silent genetic risk. I’m sharing this to raise awareness and hope that others can get answers faster, with less fear, and maybe someday — no diagnosis like this at all.

Donate Now