Our third baby, Jeffrey, arrived May 18, 1997, three days after my 43rd birthday. He joined his siblings, Matthew, then 10, and Katie, then 7. Although the pregnancy was unplanned, my husband, Randy, and I warmed up effortlessly to the idea of another baby. We didn’t worry about our lack…

A caregiver recently told me that the more she spends time helping me, the more she learns what I care most about. This longtime friend already knows that I care about faith, relationships, stories, advocacy, and sunshine, so what she was referring to are the tasks I need done because…

When you have a rare disease like SMA, there comes a point when you have to consciously choose to trust your doctors. Luckily for me, I grew up with a robust medical team. I had access to a variety of well-renowned medical systems, including my beloved Gillette Children’s, M…

More than a year after the U.S. Food and Drug Administration (FDA) rejected the muscle-strengthening agent apitegromab for spinal muscular atrophy (SMA) due to manufacturing issues, the agency has approved the add-on treatment for use by certain people with the rare genetic condition. The therapy’s developer…

My late friend and colleague Michael Morale liked to utter a phrase to me whenever I had an aquatic therapy session: “Get strong.” Michael spoke with a thick Texan accent and the utmost sincerity as he emphasized those words. He fully believed that…