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I have often said that we would try any treatment if it meant more mobility, strength, and health for our daughter Grace, who is living with Lambert-Eaton myasthenic syndrome (LEMS).  Along with the various medicines and treatments approved by the U.S. Food and Drug Administration,…

I consider myself a pretty resilient person. My husband is in the U.S. Navy, and I can accommodate most situations.  For example, we have moved 10 times, three of them internationally. I have raised our kids without my husband during five deployments. We have grown our…

Our family started quarantining almost a year ago this week. Our daughter Grace has a compromised immune system due to Lambert-Eaton myasthenic syndrome, which made us especially careful and protective of her health and well-being. For the first four months of quarantine, we embraced family time wholeheartedly. Our son was…

It is humbling to know that we are the beneficiaries of those who have gone before us. We stand on the shoulders of those who worked hard for us to benefit from their efforts and discoveries. We need not look further than the name of the disease that touches this…

Receiving a diagnosis of Lambert-Eaton myasthenic syndrome can be overwhelming. For many, the journey likely entailed multiple visits to doctors and many years of waiting. When we received our daughter Grace’s diagnosis, we learned there is no cure, but we were encouraged upon discovering that numerous treatments are available…

When our daughter Grace began exhibiting troubling signs of muscle weakness at age 14, symptoms that eventually led to a diagnosis of Lambert-Eaton myasthenic syndrome, our family quickly went into emergency mode. Our days and nights were consumed with care for her changing needs, medical appointments, treatment plans,…

We live with a thief lurking among us.   Whether it is due to Lambert-Eaton myasthenic syndrome (LEMS) or another rare disease, we all feel the loss of what is stolen from our families and loved ones with a chronic illness.   When our daughter,…

The first question I asked after my daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) was what types of treatments were available to her. I do not take it for granted that treatment is available, because I know many other rare diseases do not afford the…

I love the expectation, hope, and anticipation that comes with the dawning of a new year. Opening a newly purchased planner or journal and writing down all I hope to accomplish in the new year is refreshing. For those of us living…

Raising a child with a physical disability can be a balancing act of sorts. It requires a balance between focusing attention on the child who needs extra care and the family’s other children. It requires balancing time to fulfill responsibilities other than medical appointments. But the…