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We are all on a journey in this rare disease world. Whether we have Lambert-Eaton myasthenic syndrome (LEMS) or care for a loved one who does, our lives have been touched by the debilitating and oftentimes life-changing symptoms brought on by this rare disease. Those in our community…

Watching a loved one suffer is unbelievably hard. Watching your child suffer and lose function is practically impossible. In my view, suffering and heartache were never meant to be part of our story. Yet here we are. Each of us has extremely hard parts in our stories. In my life,…

These last days of summer blanket us with a thick layer of humidity and unrelenting sun. For us in the South, the end of summer is not marked by the turning of the seasons toward cooler weather, but instead the return of the new school year. The heat and humidity…

Turning the page on the calendar is a reminder that the new school year is quickly approaching. Like most parents, I race to squeeze in all the dentist and doctor appointments I’ve put off in lieu of summer fun. Since our daughter Grace was diagnosed with Lambert-Eaton…

“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,…