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“Kind words do not cost much. Yet they accomplish much.” — Blaise Pascal It’s that time of year again. Every six months, my daughter Grace and I make our way downtown to the children’s hospital for her biannual Rituxan (rituximab) infusion. This treatment has proven very effective in…

Our world has changed over the past few years. Around the globe, COVID-19 has altered the way we all live. While we are no longer required to stay indoors and close our shops like in 2020, the world is still different than it was. Our new reality includes frequently…

I’m a student of living life with intention. That means living with the end goals in mind. Whether they’re career goals, financial goals, or relationship and parenting goals, knowing the desired outcome helps walk you toward that goal. Some of the best parenting advice I received as a young mom…

Living with a chronic illness, or caring for a loved one with a chronic illness, can often be overwhelming. When our 17-year-old daughter, Grace, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 14, everything else in life was seemingly pushed aside. Instead of having a multidimensional life, we…

When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), she was just 14 years old. At that age, kids are just beginning to flesh out their interests and desires for the future. Grace was no different. She was beginning to learn not only what she was good…

In the world of rare disease, it’s not uncommon for a patient to see multiple specialists. We all get quite adept at maneuvering through the red tape in order for a patient to be seen, diagnosed, and treated. The first doctor we saw when our 14-year-old daughter,…

Summer is a few weeks away, and for those of us here in northeastern Florida, school is out and the temperature is rising. For the first time in years, I’m excited about the prospect of summer. I anticipate lazy days by the pool and long days at the beach,…

A rare disease diagnosis comes with many challenges. One significant challenge is the statistic that, according to some estimates, 90% of rare diseases don’t have a treatment approved by the U.S. Food and Drug Administration. Thankfully, the Lambert-Eaton myasthenic syndrome (LEMS) community is blessed to have…

I never thought much about the rhythm of our days until our daughter Grace, now 17, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 14. Time seemed to crawl when my children were toddlers. My husband was often deployed with the U.S. Navy, leaving me to fend for myself…

When our 17-year-old daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at the age of 14, we struggled to know how much to share about her health, and with whom. In some instances, such as at school or church, it was imperative that we discuss her condition so…