06/12/2026
This is what unexplained fevers look like in our house.
Every few weeks, Stormi spikes a fever. Sometimes it’s over 104°. We’ve spent years chasing answers, seeing specialists, running tests, and trying to understand why this keeps happening. But with a rare disease like Bainbridge Ropers Syndrome, so many questions still don’t have answers.
Being nonverbal makes it even harder. She can’t tell me where it hurts, what’s bothering her, or what she needs. Instead, we see it through anxiety, aggression, tears, sleepless nights, and wanting to be attached to Mom every second of the day.
Medical trauma has changed so much for her. A lifetime of appointments, blood draws, tests, hospital stays, and procedures has made anything medical incredibly scary. The second she sees a thermometer, pulse ox, blood pressure cuff, or any piece of medical equipment, her anxiety skyrockets. Even when it’s me doing it, she becomes fearful, aggressive, and overwhelmed. Even when we have visitors, instant tears when someone walks into our home.
Today, she just wants to hold my hand.
As exhausting and heartbreaking as these days can be, I’ll sit here holding her hand for as long as she needs. We try as hard as we can to keep her home during these times. Every second is touch and go there’s no sleep as we stay on top of fever medications and watch closely for any seizure activity. She wakes up from nightmares, screaming and reaching for mom. It affects her G-tube feeds and her little body so hard. I just wish I could take away the pain, the fear, and the uncertainty.
To the rare disease parents walking through the unknown too you aren’t alone.
And if anyone in the Bainbridge Ropers community has experienced recurrent unexplained fevers, I’d love to hear your story. We are looking forward to attending the ASXL conference for more answers.
