When our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at the age of 15, worry consumed me. I wondered what her young life would look like as she grew older. The unknown kept me up at night. I worried about Grace’s quality of life and if she’d…
“Two roads diverged in a wood, and I— / I took the one less traveled by, / And that has made all the difference.” — “The Road Not Taken” by Robert Frost Some roads we choose, while others we are forced to walk. Our journeys are marked by big and…
No two stories are quite the same — particularly among those living with Lambert-Eaton myasthenic syndrome (LEMS). When our daughter Grace was diagnosed with the condition at age 15, I was desperate to find a story similar to hers. I needed to see what LEMS looked like in someone…
“I don’t know what lies around the bend, but I’m going to believe the best does.” — the author L.M. Montgomery, in the novel “Anne of Green Gables” Hope. We throw that word around easily. We hope people have a nice day or remark that we “don’t want to get…
It started with a phone call. Our daughter Grace, who was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, was due for her annual neurology appointment. Things had been pretty quiet with her health since her treatment plan was implemented almost four years ago. Grace has responded…
We all know that Lambert-Eaton myasthenic syndrome (LEMS) doesn’t discriminate. Those who are affected by the disease come from all walks of life and from all over the world. Today, I’m excited to introduce my readers to Sam Joseph, who hails from Worcestershire, England. Sam and I first “met” on…
It’s been years since my family has seen snow. Four years ago, we moved across the country from the frigid north of New England to the balmy beaches of Florida. At the time, our daughter Grace was exhibiting signs of what we now know is Lambert-Eaton myasthenic syndrome (LEMS),…
The first time we noticed our daughter Grace exhibiting symptoms of what we now know to be Lambert-Eaton myasthenic syndrome (LEMS), we were in the airport traveling to Texas for Christmas. Our three kids were dragging their suitcases through the parking garage to the check-in counter. Suddenly, we…
All of my babies have been little since birth. My two biological children weighed 6 pounds or less when they were born. Even our daughter Grace, who was adopted at 13 months old, was a tiny little thing when she came home to us. Except for Grace, food just didn’t…
It had been a good day. My daughter Grace and I accomplished things I never thought she’d be able to do again. Her diagnosis of Lambert-Easton myasthenic syndrome (LEMS) several years earlier had upended our world and everything she had known. But with the right treatments, Grace…
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