Six years, valley after valley

Two happy girls, puppet shows, games, mountain-bike trails with Sonic runs after. Nothing exotic. Just a simple and good life. Brinlee was smart as a whip, spunky, with an immense love for life.

We found her fallen from a recliner, dazed, with no idea what had happened. A trip to the ER gave us no answers. Then came a full tonic-clonic seizure, and we knew.

Her first medication eventually stopped the seizures for about a year and a half. We let ourselves believe it might become a distant memory. Then it stopped working, and the seizures came back.

We were told the only option was to try drug after drug; the science simply wasn't there for anything else. Each one brought brutal side effects; one made our gentle girl violent. When the neurologist's options ran out, we moved to an epileptologist, who began stacking medications.

On one medication Brinlee began collapsing without warning, going limp in an instant and hitting the floor before we could catch her. We walked everywhere holding her hand, and still her hand would slip from our grip. It was a very stressful time. We learned to stop deferring and to push back, insisting we wean the drug that we believed was causing it.

As we weaned, she improved. We began a strict ketogenic diet, weaned off all medication, and had the best stretch in years: periods of days with no seizures. Some going for weeks, although it was rare. For a while, we could breathe.

Like everything in this journey, the reprieve faded. The seizures returned, too many to manage, and we faced going back on medication, now weighing every choice against her quality of life and our family's.

A specialist in Houston studied Brinlee's whole history more thoroughly than anyone had, and still had no answer, referring us onward to the Undiagnosed Disease Network, for cases too rare to name. That search continues today.

With seizures still frequent, we tried a final, riskier medication, one that requires regular blood draws to be sure it isn't doing harm. It's a last-ditch option, and that is where we are.

Brinlee still has many seizures, but this medication has steadied things a little: her labs are clean, her mood is better, the seizures are more predictable. Most come at night, so Katrina and I take turns to monitor her. Roughly every two weeks, one comes during the day just to keep us on our toes. And we are still working to get her into the Undiagnosed Disease Network, still hoping for the answer that has never come.