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…
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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There were a lot of things I thought my daughter would never do again after her Lambert-Eaton myasthenic syndrome (LEMS) diagnosis. Grace was 15 when she was diagnosed, and her symptoms progressed rapidly. She lost the ability to play the sports she loved — basketball, volleyball, and…
“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” — Mother Teresa In my experience, if someone claims that you can’t make a difference in someone’s life, I’d guess they’ve never walked the hard road of…
As the days slowly lengthen and stretch before us, I am faced with new challenges caused by Lambert-Eaton myasthenic syndrome (LEMS) and the limitations it places on our 16-year-old daughter, Grace. After a year gone topsy-turvy with COVID-19 protocols and accommodations, we came to a manageable…
Recently, I wrote about our family’s periodic need to assess medication protocol. This helps us figure out what is and isn’t working. I am a caretaker of our 16-year-old daughter, Grace, who has Lambert-Eaton myasthenic syndrome (LEMS). It is important that I communicate with her to determine…
Most people in the rare disease community can relate to the constant march to various doctors in our quest to manage our health, or that of a loved one. Our doctors are invaluable. If we are really blessed, they walk compassionately beside us on the…
It seems that Lambert-Eaton myasthenic syndrome (LEMS) likes to keep us guessing. Two years after our daughter Grace’s diagnosis, we are still learning how the disease affects her. On many days, we feel that Grace has settled into a manageable routine. We see improvement in her…
For the first year after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), our schedule was filled with doctors’ appointments. Referrals to neurologists, rheumatologists, dietitians, and physical therapists abounded. Add in monthly IVIG treatments, and it felt like we lived at the hospital.
As the mom of a 16-year-old daughter with a rare disease, I’ve had to learn how to accommodate Grace’s limitations. Many daily activities became much harder after she was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). My goal is to make her life with LEMS as easy…
If anyone had told me three years ago how our life would look today, I would not have believed them. I never thought I’d be caring for a child with a rare disease. It is exhausting, rewarding, and I don’t think anyone can prepare for it. …
We are living in unprecedented times involving a pandemic and political and social unrest that has been debated in many homes and communities. Even amid all the disagreement and opposing views, I think most of us can agree that the benefits of community have been…
The paths of those affected by Lambert-Eaton myasthenic syndrome (LEMS) hold many twists and turns. Our family has experienced many ups and downs since our daughter Grace was diagnosed. The promise of treatment brought elation, but the reality of minimal results from that…
Eeyore from “Winnie the Pooh” has never been my favorite character. For most of my life, I could not relate to his ever sad disposition. He always seemed so melancholy and intent on seeing the negative side of life. In contrast, I saw myself as…