I’m a product of the 1970 and ’80s. We grew up with big hair, neon fashion, and the rise of music videos on MTV. I can remember sleeping on the floor of our family…
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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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
As we enter what I consider to be the most wonderful time of the year, I reflect on why this season of giving is so magical. Does it really have anything to do…
I have come to appreciate the act of learning late in life. Until recently, I had taken for granted the ability to go to school, learn, and be educated in the field of my…
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