Raising a child with a rare disease like Lambert-Eaton myasthenic syndrome (LEMS) has its challenges. One area that was challenging for me was knowing when to push beyond the bounds of normal advocacy for something I knew my daughter Grace needed. With practice and time, I have grown stronger…
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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I am a mom to an adult daughter who has Lambert-Eaton myasthenic syndrome (LEMS). My daughter Grace was diagnosed at the age of 15, after nine months of falling, experiencing severe muscle weakness, and slurring her words. One of the most encouraging aspects of our LEMS journey has…
I felt very alone when our daughter, Grace, was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). I had no idea where to turn for help. Our family didn’t know anyone with LEMS, or any other rare disease. Her doctor had limited resources and knowledge of the condition. We were walking blindly…
Most lives have been interrupted by the events of the past two years. People across the globe have had to cancel plans, miss family reunions and weddings, curb travel, and limit contact with others. Our family has been no exception. Most notably, during the pandemic, our eldest son moved to…
Every six months, my 16-year-old daughter, Grace, receives a dose of Rituxan (rituximab), the latest and greatest treatment we have added to her regimen for Lambert-Eaton myasthenic syndrome (LEMS). Before that first dose, Grace was exhausted all the time. She was able to do very little outside the house…
Some days are just harder than others. Wouldn’t you agree? Much of the time, I feel like we are moving along nicely on this rare disease journey. We are in a good rhythm with the treatment plan for our 16-year-old daughter, Grace, who has Lambert-Eaton myasthenic syndrome (LEMS). Yet, out…
At this time last week, I found myself back in the place where our journey with Lambert-Eaton myasthenic syndrome (LEMS) began. We were living in Connecticut when our daughter Grace began experiencing unexplainable symptoms, including random falls, walking with a limp, and arm weakness. Thus began our exploration into the…
One of the first accommodations we made after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) was acquiring a disabled person parking permit. One of the prominent symptoms of LEMS is muscle weakness, which can make walking for any length of time very difficult. Grace had an…
Summer can present a host of problems for those living with Lambert-Eaton myasthenic syndrome (LEMS). Heat and humidity are known to exacerbate muscle weakness. Our family lives in Florida, which presents many challenges for our daughter Grace, who is living with LEMS. Over time, we have come up with…
I consider watching our daughter struggle through the symptoms of Lambert-Eaton myasthenic syndrome (LEMS) one of the most difficult aspects of my life. As I look back on the last two and a half years since Grace began showing symptoms, I realize how I haphazardly stumbled through the five…
A few weeks ago, I wrote about our daughter’s desire to get a summer job. I was overwhelmed with the limitations that Grace faced in her job search, knowing she can’t work a typical job for teenagers like most of her friends. Many of the jobs available to her…
I have spent most of my life in a rush. As someone with a Type A personality, I love to be organized and manage my time efficiently. A great day for me is full of activities and to-do lists. Every task seems to carry a sense of urgency. There…
Our family loves to travel. Thanks to the military, we have spent years raising our kids in places like Singapore, Thailand, and Italy. We have loved our visits to monasteries in Germany; castles in Austria; beaches in Indonesia, Malaysia, and the Maldives; and Big Ben in England. But when our…