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,…
One of the first things I learned about after finding out our daughter Grace has a rare autoimmune disease were the various diets that target autoimmune issues. Many of these diets claim to alleviate autoimmune diseases and their symptoms to some degree. At first, I was overwhelmed with the…
Social media comes with a lot of pros and cons. One of the positive aspects of Facebook, in my opinion, is the memories feature that sporadically pops up. I love it when long forgotten memories pop up in my feed. The Christmas list from my 10-year-old daughter asking for a…
Not long ago, my family traveled to San Francisco to visit our son and his new wife. It was our first chance to travel since our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). One of the highlights of the trip, after seeing our son…
It has been just over a year since I began writing this column, “Stretcher-Bearers.” What a blessing it has been to become a part of this community and to be able to share information and words of encouragement. Since I write mostly about my daughter’s experience…
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