Finding the Strength to Fight Another Day

I remember the exact moment I realized we were facing a giant in my daughter Grace’s life. Barely a teenager, she had symptoms that eventually resulted in a diagnosis of Lambert-Eaton myasthenic syndrome (LEMS). The realization happened before all of the MRIs, the CT scans, the cancer scare, and the various misdiagnoses. It was certainly before we had ever heard of LEMS.

I had taken Grace, who is now 17, for an annual physical around her 14th birthday. She had started limping, and we thought she might have sprained something. The doctor asked a ton of questions, tested her reflexes, and then asked her to squat and stand back up. As she pushed herself off the floor from a squatting position, I saw the deeply concerned look on the doctor’s face. The doctor caught my eye from across the room and mouthed silently, “We have a problem.”

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I knew in that moment that we were facing a battle of epic proportions, one I didn’t want to fight. I didn’t feel ready to fight it, nor did I feel I was strong enough. But like any battle that must be fought, I walked hesitantly toward it.

The first challenge we faced was gaining access to medical specialists. I’m not a patient person, even on a good day. But when your daughter is wasting away before your eyes, any patience you have runs out fast. So when I called for a neurology appointment in the month of July and they told me a doctor could see Grace in October, I was ready for a fight.

I called back every day to explain our situation. I probably cried more than once. After two weeks of this, we finally secured an appointment for the following month.

The next battle we faced was with the U.S. Navy. At the time of Grace’s diagnosis, we were stationed somewhere that didn’t have pediatric neuromuscular specialists, and the closest ones were five hours away. Grace and I had to take a 10-hour trip two or three times a month. The situation was untenable, and I knew things wouldn’t change without a fight.

Thankfully, the U.S. military protects its families with a program specifically aimed at families with special needs children. The program requires the Navy to maintain these children within a two-hour distance to their doctors and medical care facilities. After jumping through all of the hoops and red tape, the Navy graciously moved us again, after having relocated us just six months earlier.

Throughout our LEMS journey, I have met valiant fighters. These include mothers who fight the U.S. Food and Drug Administration and pharmaceutical companies for access to medication their children desperately need; spouses who fight a lack of knowledge about this rare disease within the medical community; and LEMS friends who fight every day to be able to walk without assistance.

Some people fight insurance companies for coverage of expensive drugs or off-label treatments. Others fight for quality of life for patients and their loved ones. All of us fight for answers. We are a group of folks who know our way around the battlefield. It’s not glamorous, and it is exhausting. Yet we fight on.

As Winston Churchill once proclaimed, “[W]e shall defend our island, whatever the cost may be, we shall fight on the beaches, we shall fight on the landing grounds, we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender. … ”

Battle on, my friends. Don’t give up. What we are fighting for is worth the cost.

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.