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.
Stretcher-Bearers — Lori Dunham
Lori Dunham and her family have lived all over the world thanks to the U.S. Navy. She has a degree in human resources but enjoys writing to encourage and inspire others. When her daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome at age 15, Lori sought community and encouragement from those walking a similar path. Lori’s mission in writing is to inspire and encourage those who find themselves in the role of caregiver. When she is not writing or homeschooling her two youngest, Lori enjoys reading, baking, and spending time with family. Currently they live in Jacksonville, Florida.
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This time of year entails so much change. A new school year brings new teachers, friends, and routines. Stores are full of clothes, backpacks, and freshly sharpened pencils. For most of us, these kinds of transitions are welcome. But life also brings changes that are much harder to embrace. For…
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…
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 with the gifts under the tree, the parties, or the Christmas lights? Many of us fill…
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 choosing. It was something I was expected to do, so I did it, mostly with little…
It’s often true that we never really know how much we treasure something until we no longer have it. We can also tend to take things for granted in life by never truly appreciating what we have until it’s taken from us. I found this to be true of sleep…
“I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.” — Unknown I never gave much thought to those living with chronic illness until our family experienced it firsthand. Now that our daughter Grace lives with Lambert-Eaton…