Mina’s Journey: A Glimmer of Hope

Mina didn’t come into the world the typical way, but she quickly began catching up in her own time. In her early toddler years, she was growing into a curious, playful little girl—feeding herself, walking, babbling, clapping, and even dancing. She was a normal toddler: unwrapping presents, fighting with her older sister, and caring for her baby dolls. Pretend kitchens, blanket forts, mega blocks, and pushing her shopping cart made her happy. One of her favorite games was playing peek-a-boo at the end of the couch—she’d giggle every time she popped her head out to surprise us. Aside from some hearing challenges and a unique little hop in her step, she seemed like any other toddler.

But slowly, things began to change, and we don't know why.

It all started shortly after Halloween of 2023. Mina underwent surgery for her second cochlear implant and, while recovering, our entire family caught COVID for the first time. Mina only ran a fever, but something shifted in the weeks and months that followed. She slowly regressed—stopped walking on her own, began losing weight, and stopped making eye contact. She would stare off for long periods, and eventually, her smile faded, and her laughter was just a memory. We also noticed that she lost control of her hands. They were always tightly clenched; her arms pulled in close against her chest. She could no longer sit up, crawl, or support herself in any way. It was heartbreaking to watch such a lively little girl slowly lose so many of the abilities she once had.

At the same time, we were transitioning her from Keppra to Valproic Acid to manage her seizures. Could the medication have played a role in her regression? We’re not sure—but we couldn't ignore how much her personality seemed to fade as the dose increased.

Now, in April 2025, we’re seeing tiny glimmers of the Mina we knew returning. Her VNS implant is working wonderfully, and we’ve been carefully tapering her off of Valproic Acid. Each small decrease brings back a little more of her personality. She still hasn’t smiled or laughed, but we hold on to the hope that it’s coming.

Her most recent VNS scan on April 3rd showed no seizure activity—a huge win for our girl. In May, she’ll have an EEG to make sure her brain is still in the clear before we continue lowering the medication.

With everything Mina has faced these past three years, every small victory feels huge. We're holding on to that glimmer of hope and celebrating each step forward—no matter how small. With her therapies (speech, physical, and occupational), daily workouts, activities at home, the support of her VNS implant, and the decrease in medication, we are beginning to see improvements.

It’s a slow process, but every bit of progress gives us more hope for the future.

Brave like Mina. Brave like Beans.