Rare, Real & Risky: My Syringomyelia Journey

Hi friends, family, and compassionate strangers,

This is one of the hardest things I’ve ever had to write. I’ve always been the helper—the one behind the scenes organizing, supporting, and giving through our nonprofit foundation. But now, I find myself on the other side of need, and it’s humbling.

Recently, I was diagnosed with Syringomyelia, a rare spinal cord condition where fluid-filled cysts (syrinxes) form inside the spinal cord. Most people who suffer from this have one. I was told I have two—one in my cervical spine and another in my thoracic spine. The odds are rare, the diagnosis is complex, and the potential outcomes are terrifying.

So far, four hospitals have turned me away because of the complexity of my case. I was finally able to meet with a specialist who confirmed what we feared: if I don’t have surgery, I could face full paralysis from the neck down. But even with surgery, the risk remains—it could help, or it could accelerate the damage.

This is not a decision we take lightly. The road ahead is filled with unknowns, painful procedures, and incredibly difficult choices. We are hoping and praying that Johns Hopkins will accept my case and give us the best possible chance for a better outcome.

As someone who is self-employed, I don’t have sick days, vacation time, or disability leave. This is also our busiest season for work, and stepping away is financially devastating. Between the appointments, testing, travel, and hopefully surgery, I’ll need time off to heal—and that time comes with a financial burden I can’t carry alone.

I never thought I’d have to ask for help like this. But today, I’m asking.

I’ve set up a GoFundMe to help cover medical expenses, travel, and lost wages during this incredibly difficult time. Every donation, share, or message of encouragement means more than you know. Your kindness will help ease the burden on my family so we can focus on healing and navigating what’s ahead.

I’ve spent years giving back to others. Now I’m holding onto hope that the same love and support will come back around.

Thank you for reading, thank you for caring, and thank you for being part of my fight.

With gratitude and strength,

Brittany