“I’m so glad I live in a world where there are Octobers.” — L. M. Montgomery, “Anne of Green Gables” October has always been one of my favorite months. I grew up in the beautiful Northeast of the U.S., where autumn meant driving down back roads lined with towering…
My daughter, Grace, is an animal lover, always wanting to rescue the homeless or sheltered dog, the stray cat, or the random gerbil that needs a new home. So it was no surprise to me when she asked about getting a service animal after she was diagnosed with…
It’s funny to think how life’s little moments can suddenly become momentous. Rarely do I start a day thinking it will be spectacular. However, when we intentionally look for the good flowing through our days, we can’t help but see the beauty all around us. Several months into my daughter…
Most of us in the Lambert-Eaton myasthenic syndrome (LEMS) community have been following a court case involving Ruzurgi (amifampridine), the only LEMS treatment approved by the U.S. Food and Drug Administration for children under 17. In 2019, Catalyst Pharmaceuticals sued the FDA and other parties over the agency’s…
“There are far, far better things ahead than anything we leave behind.” – C. S. Lewis As the wife of an active-duty military member for 23 years, I have known my share of change. Usually, our family embraced a new duty station with gusto. We often planted quickly and firmly…
When my son was in high school, he had an individual education plan for math. This plan accommodated his need for extra help and time in a subject that didn’t make sense to him. Otherwise, he was a very successful student. He received a perfect score on his language arts…
Raising a child with a rare disease like Lambert-Eaton myasthenic syndrome (LEMS) has its challenges. One area that was challenging for me was knowing when to push beyond the bounds of normal advocacy for something I knew my daughter Grace needed. With practice and time, I have grown stronger…
I felt very alone when our daughter, Grace, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). I had no idea where to turn for help. Our family didn’t know anyone with LEMS, or any other rare disease. Her doctor had limited resources and knowledge of the condition. We were walking blindly…
Most lives have been interrupted by the events of the past two years. People across the globe have had to cancel plans, miss family reunions and weddings, curb travel, and limit contact with others. Our family has been no exception. Most notably, during the pandemic, our eldest son moved to…
Every six months, my 16-year-old daughter, Grace, receives a dose of Rituxan (rituximab), the latest and greatest treatment we have added to her regimen for Lambert-Eaton myasthenic syndrome (LEMS). Before that first dose, Grace was exhausted all the time. She was able to do very little outside the house…
Get regular updates to your inbox.