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Every six months, my daughter Grace and I go to the children’s hospital for her Rituxan (rituximab) infusions. This has proven to be one of the most effective treatments for Grace after she was diagnosed with Lambert-Eaton myasthenic syndrome at age 15. The Rituxan infusions are usually preceded…

I am not a skilled photographer. Family milestones come and go, and I’ll forget to document them. Christmas will slip by and I won’t take any photos. The same goes for birthdays. I’d like to think I’m too focused on living in the moment to stop and capture it in…

New Year’s always prompts such optimism for the future. It’s as if the world pauses from the chaos of the year to welcome a more promising time. I’m certainly hopeful about what the days ahead will bring. I’ve lived through the previous year’s challenges and now wish for brighter days.

My husband says traveling is in his blood. He grew up overseas, so it was only natural that we would often travel to his “home” early on in our marriage. When we started having kids, we learned all the tricks of traveling with toddlers. Thanks to the U.S. Navy, we…

I don’t like surprises. Almost every Christmas, my husband and I end up sharing what we bought for each other long before we find the gifts under the Christmas tree. Along the same lines, I would much rather plan for and anticipate a vacation than be surprised with one. So…

When my daughter Grace was 10, she requested a taser for Christmas. I’m not sure what prompted this request or why she felt the need for one. Regardless, she did not find a taser under the Christmas tree that year. However, as she grew into a young teen, Grace continued…

Traditionally, November is when we give thanks. With Canada and the U.S. celebrating Thanksgiving in October and November, respectively, it’s a season when many of us turn our attention to gratitude. That’s even true for us in the rare disease community. We face many hurdles throughout the year; life with…

Election Day last week in the U.S. brought new excitement to our home. A few weeks before that, we had discussed the issues and candidates in our home state of Florida. We usually don’t follow politics very closely, but we do educate ourselves in order to make informed decisions at…

Last week, I wrote about the unexpected surprise of hearing Lambert-Eaton myasthenic syndrome (LEMS) mentioned on television. In that episode of “The Resident,” a majority of the dialogue centered around the decision to perform an electromyography (EMG) test in order to correctly diagnose a patient. As Lambert-Eaton…

It always amazes me when I hear Lambert-Eaton myasthenic syndrome (LEMS) mentioned somewhere outside of our daughter’s neurologist’s office. Most people have never heard of this particular disease. Oftentimes when I’m asked what illness my daughter has, I can’t get “Lambert-Eaton myasthenic syndrome” out of my mouth before…