research

Upcoming Research Gives Me Hope for the Future of Pediatric NMO

In the five years since my daughter Bella, 14, was diagnosed with neuromyelitis optica (NMO), I have just barely come to accept that we may never know how or why she developed the disease. As Bella’s mom, I’ve spent countless sleepless nights filled with guilt and worry that something…

Food for the Soul and the Body

When I walk through the doors of Satay Sate, a local Indonesian restaurant, the aromas that hit me instantly remind me of my childhood. I first ventured there after my dad died, and I was brought to tears at my first bite. It was like they had stolen Dad’s recipes.

Moving Forward After an NMO Diagnosis

A chronic illness diagnosis can be stressful, overwhelming, and scary, especially when the illness is rare and has no cure. When my daughter Bella was diagnosed with neuromyelitis optica (NMO) in 2017 at age 9, we were instructed by her doctors to spend one hour online learning everything we could…

Making Every Second Count While Waiting for a Miracle

During the six weeks that my daughter Bella, 13, was hospitalized at Children’s Hospital Colorado for a neuromyelitis optica (NMO) attack in 2017, my husband and I kept vigil at her bedside. Too worried to sleep, we prayed for a miracle every night. As soon as we received Bella’s…