Our Daughter Is the Rarest of the Rare
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…
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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My daughter finally returned to one of her favorite activities
When my girls were 10 and 12, the Navy moved our family from the warm climate of Florida to the shores of New England. We embraced Connecticut wholeheartedly and couldn’t wait to see snow.
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Our Experience Transitioning From Ruzurgi to Firdapse
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…
Finding the Right Treatment for My Daughter Made All the Difference
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…
Benefiting From Advances in Modern Medicine
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…
Treating Our Daughter’s COVID-19 With Sotrovimab
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…
Weighing the Pros and Cons of Special Diets for Autoimmune Disease
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…
Realigning My Perspective to the Important Things in Life
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…
As the New Year Begins, Let’s All Seek Out Our Support Networks
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…
A Word From One of the Younger LEMS Patients
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…
Finding Hope During the Most Wonderful Time of Year
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 Appreciate Resources That Enable Me to Learn About Rare Disease
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…
Seeking a Good Night’s Sleep With an Autoimmune Disease
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…