Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest.    Two entries in November’s “Disorder: The Rare Disease Film Festival” will focus on what siblings go through, according to the San Francisco festival’s co-founder,…

As of this writing, my family and I have been in quarantine for over a week because my husband, Jared, has COVID-19. We were anxious after he tested positive,  because we didn’t know what the outcome would be. Thankfully, he’s doing much better, and his symptoms have subsided. He…

Last week, I visited an outstanding church member in a local hospital. When I arrived, I saw a friend in the lobby, looked into her eyes, and knew that something was dreadfully wrong. She explained that her baby suffered unexplained medical issues and required immediate care. Parents whose children are…

Last week was busy. I spent four days in the mountains on a clergy retreat at the Sacramento Camp and Conference Center in southern New Mexico. When the retreat ended last Thursday, I went to my home elsewhere in the state, met a group at my church, and then…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for a…

My youngest son, Caeleb, crossed the stage on Saturday afternoon and received his high school diploma. He relied on the assistance of a cane, which serves as a constant reminder of the chronic pain he suffers as a result of breakthrough bleeds in his right knee and ankle.

With Valentine’s Day over, it’s amazing to look back at the “Love Month” celebrations my husband, Jared, and I have had since we first started dating. In our six years together, we’ve had our share of Valentine’s Day celebrations. Some stood out more than others. One example is the time…

My wife is scheduled for surgery this week in Albuquerque, New Mexico. She will be in the hospital for one or two nights. We live about 3½ hours from the hospital, so we will be gone for about three days. We are optimistic that her recovery will go well…

For the last two weeks, my family has celebrated a significant milestone for my youngest son, Caeleb. He graduated high school and now looks forward to life as a college freshman. My boy is excited about this new adventure. While I’m grateful that he celebrated a mountaintop experience, I…

On a recent Sunday afternoon, cabin fever got the best of my family and we headed out to see where the road would take us. Our parameters were straightforward: It had to be within an hour, and the destination had to involve water. Because local traffic has been nearly absent,…