Carolines Story

During my sophomore year of high school, I began experiencing neurological symptoms which led doctors to recommend a spinal tap in hopes of finding answers. Shortly after the procedure, I developed a cerebrospinal fluid (CSF) leak and was hospitalized for several days. The medical team believed the leak had resolved I was eventually discharged. But over the following months, I began to experience persistent neck pain, and soon, daily, debilitating headaches. I had numerous MRIs, CT scans, and blood tests over the years, all of which came back normal. With no clear answers, doctors felt I was suffering from chronic migraines. As an athlete, it was incredibly tough. But my faith, my love for swimming, and my determination helped me push forward—I made it to college, swimming for Vanderbilt University. For five years, I lived with constant, excruciating pain, pushing through school, athletics, and life, despite it robbing me of my health and joy. I endured over 100 nights in the hospital, 8 spinal taps, dozens of medications, infusions, procedures, and treatment plans... until it nearly killed me. Everything changed last November. After returning from Thanksgiving break, I began experiencing intense head pressure—like my head was actually going to explode, along with many other symptoms. I visited the student health clinic three times. Each time I was dismissed and told it was just a virus. After six days of worsening pain and no relief, I knew something wasnt right. I made the decision to drive from Nashville straight home to the ER in Louisville. When I arrived, I had a fever of 102.8°F. After multiple scans and tests and another spinal tap, doctors determined I had viral meningitis. Between November and January, I was hospitalized three separate times with severe symptoms. In addition to meningitis, I was also diagnosed with mononucleosis and COVID-19—all at the same time. The prolonged CSF leak had compromised my immune system, allowing infections to reach my brain and body. At one point, I was unconscious for a week and could barely walk, see, or speak when I woke up. Still, we didn’t give up. My family’s determination, supported by prayer and faith, brought us to the Mayo Clinic in Minnesota, where I was evaluated by an exceptional team. After seeing infectious disease doctors, neurologists, and a neuro-ophthalmologist, we discovered that my symptoms were positional—a key indicator of a CSF leak. I was immediately scheduled for a blood patch procedure. Within 48 hours, my symptoms were completely gone. I have now been headache- and pain-free for over four months. My life has transformed. For the first time in years, I’m living without pain—and I finally feel like myself again. I returned to Vanderbilt in February, after working with a physical therapist, occupational therapist and visual therapist to help me regain my strength that was lost due to my illness.-This is still a work in progress :) I’m incredibly grateful for my friends, family, doctors, professors, and the countless people who supported me and my family during this journey. Though my CSF leak ended my swimming career, stole years of my life, and left me fighting to survive. I now know: God had a reason for my suffering. It grew my faith, shaped my purpose, and led me to this moment—to help others facing the same battle. I’m one of the lucky ones. Many go decades without answers. That’s why I’m sharing my story, to raise awareness, funds for CSF leak research, and offer hope—so others don’t have to suffer in silence. ✨ Your support can save lives. ✨ Please consider donating via the link in my bio to fund research, increase awareness, and support early diagnosis and treatment. Together, we can make a difference. ?

I'm raising money for the Spinal CSF Leak Foundation!

I’m thrilled to be participating in duradash® 2025, an annual fundraising event for the Spinal CSF Leak Foundation. This year’s virtual fundraiser will run from May 25–June 7, 2025. The duradash® event aims to raise awareness and funds in support of spinal CSF leak research and education, so that more patients living with this under-diagnosed and disabling neurologic disorder are able to receive correct and timely diagnosis and treatment.

The virtual challenge aims for a total of 150 minutes of any activity, to be done at any time, anywhere. The theme is to "start where you are" - to meet people at their current level of ability and encouraging activity meaningful for the individual.

I’m passionate about this cause and need your help! Every donation—big or small—helps me reach my fundraising goal and directly impacts research and funding for this under-diagnosed, debilitating condition.

Here's how you can help:

  • Donate: Contribute whatever you can. No amount is too small!
  • Spread the Word: Share my fundraising page with your friends, family, and social networks. Let’s spread awareness so we can raise more!
  • Stay Engaged: Check back periodically for updates on my progress to my activity goal! Share my accomplishment far and wide!

Thank you for standing by me in this effort. Your support means the world to me!

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My Supporters

  • Geoffrey Boggs June 2025 $26.25
  • Richard E Herrmann June 2025 $100.00
  • Christine Hughes You are  amazing!! June 2025 $200.00
  • Pilar Pagni June 2025 $25.00
  • Renee Thiesing June 2025 $100.00
  • Elizabeth Hyslop May 2025 $500.00
  • Christine Hughes You are  amazing!! June 2025 $200.00
  • Fran Thornton June 2025 $150.00
  • Richard E Herrmann June 2025 $100.00
  • Renee Thiesing June 2025 $100.00