Columns

Every now and then, I have one of those days when nothing goes right. The unexpected happens and throws off the whole day’s routine. I had one such day last week. That particular morning, I slept through my alarm, only to wake late and find we were out of coffee.

I remember the moment I realized our daughter Grace had Lambert-Eaton myasthenic syndrome (LEMS) like it was yesterday. It was a hot, summer day in Florida. I had sequestered myself on our outdoor balcony to look through her medical chart. I hadn’t yet heard from Grace’s doctor after he’d…

I have trained myself to look for the good in situations throughout my adult life. It’s not always easy. When my daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), I never thought I’d see good come from it. However, in time, good things have happened directly because…

I vividly remember trips to the library as a young girl when a research paper was due. Once there, I’d trudge to the reference section and spend hours hunting for answers and information from encyclopedias, periodic journals, and various books. Once I gathered the information, I’d type up my research…

The World Health Organization considers a disease rare when it strikes fewer than 65 people per 100,000. Here in the United States, a disease is considered rare when fewer than 200,000 people are affected by it. Looking at those numbers, most people feel the odds are pretty good that…

Parenting comes with the danger of holding on to a lot of regret. As our kids grow up and move into adulthood, we can fall into the trap of blaming ourselves for all kinds of things they encounter. That was definitely the case when our daughter Grace was diagnosed…

Change is inevitable. Life won’t look the same tomorrow as it did yesterday, that’s for certain. Those of us in the Lambert-Eaton myasthenic syndrome (LEMS) community know that all too well. We understand what it feels like to have our world upended by a rare disease diagnosis. When…

It’s that time of year again: the dreaded cold and flu season. I’ve never been more aware of it than I am today. Yes, I’m older than I once was, and sickness seems to hit me harder and last longer than it did in my younger years. However, it’s not…

There are things in this life that amaze me. The generosity of a stranger and random acts of kindness rejuvenate my view of mankind. The family that chooses to march forward in hope after the loss of a child is a sacred thing to see. It’s in these moments that…

Once a month, Anovo pharmacy calls to refill my daughter Grace’s prescription of Firdapse (amifampridine). The conversation doesn’t vary from month to month. First, they’ll inform me the call is being recorded. Next, they’ll confirm some personal information. Finally, they’ll ask if Grace has missed a dose since…