Hi everyone. I’m a mom of two young children, one of whom is medically complex. 2025 has been by far the hardest year of my life. My husband and I rang in the new year in a hospital room, watching the ball drop while our 10-month-old daughter on a ventilator after a seizure that lasted over an hour—the longest she’d had at the time. She began having seizures at four months old, but this hospitalization fast-tracked genetic testing. Two weeks later, we learned she has a very rare, spontaneous genetic form of epilepsy. Neither my husband nor I are carriers.
She was ultimately diagnosed with Dravet syndrome, the most severe end of the spectrum. The first half of the year was spent trying to understand and manage this diagnosis. She has since had multiple seizures requiring ventilation, and as the year went on, her seizures became more frequent and required rescue medications.
By some miracle, she was accepted into a clinical trial and underwent brain surgery the week before Thanksgiving. She received the final available spot of 2025—an optional slot the doctor chose to fill. The trial required us to stay nearby, so we lived in another state in an extended-stay hotel for a month. Because she is immunocompromised, we rarely left the room except for follow-up appointments and groceries.
I worked hard in 2025 to lose weight but gained back 10 pounds in the last two months amid everything going on. I’m looking forward to the accountability and to finally prioritizing myself in 2026.
