I remember the exact moment I realized we were facing a giant in my daughter Grace’s life. Barely a teenager, she had symptoms that eventually resulted in a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS). The realization happened before all of the MRIs, the CT scans, the cancer scare, and the…
I love taking care of people. I always wanted a family, and I’ve loved my role as a mother and wife first and foremost. However, our daughter’s diagnosis of Lambert-Eaton myasthenic syndrome at age 14 added a whole new dimension to my caretaker duties. I was unprepared for…
I have never been a fan of roller coasters. I learned early on that I like to keep my feet firmly planted on solid ground. Growing up in Pennsylvania, I recall many field trips to Hersheypark. Even in my teenage years, I much preferred its tilt-a-whirl or bumper cars to…
There was a time when I thought I’d never smile again. For most of my life, my smile came easily. Through good times and bad, a smile never cost me much. I was able to compartmentalize my hurts and had a general sense that the good usually outweighed the…
One of the first treatments offered to our daughter Grace, now 16, after she was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) was intravenous immunoglobulin (IVIG). Every three or four weeks we would head down to Wolfson Children’s Hospital in Jacksonville, Florida, for her infusion. The hospital always did a…
From the start, our daughter’s life was harder than most. When we adopted Grace when she was just 13 months old, she was among the roughly 81,000 children adopted by American families from China in the late 1990s and early 2000s. She came to us underweight and malnourished. She…
In May 2019, the U.S. Food and Drug Administration (FDA) approved Ruzurgi (amifampridine) for the treatment of Lambert-Eaton myasthenic syndrome (LEMS) in children ages 6-16. Our daughter Grace, then 14, was diagnosed with LEMS that July. Although receiving the diagnosis was hard, we were relieved that medication was available.
The calendar dictates my days. Most years, our family marks the passage of time with birthdays, Christmas, Easter, and a highly anticipated summer vacation. But since our daughter Grace, 16, was diagnosed with Lambert-Eaton myasthenic syndrome two years ago, our calendars have taken on a different rhythm. Now the year…
This year has gotten off to a rocky start in our family. It began with a call on Jan. 3 informing us that my father had a heart attack. He had just returned home after a visit with us in Florida. Thankfully, he got the medical care he needed and…
Given the most recent COVID-19 surge, it seems that many people are resigned to getting sick with the new coronavirus variant, omicron. I pushed hard against this idea because our daughter Grace, 16, has the autoimmune disease Lambert-Eaton myasthenic syndrome. Although many have described omicron as just a bad cold,…
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